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?

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

Intentional Failings. Human Potential.

     Be it Mom's "focus on the positive, and ignore on the negative" mantra, strengthened by my necessary modification of that mantra, "focus on the positive and learn from the negative," not since my junior high school cry, "Mom, don't you know I can't do that!" have I allowed myself to itemize "the negative" and use that low "bank [of capabilities] balance" deter me from investing my life in what I could do.  In fact, many times, truth be told, use of "the negative" as a justification for not acting or doing a given task leads me to cry out in opposition.
     The Boston Marathon Bombings suspect has led me to revisit my mantra, "Focus on the positive and learn from the negative."
     We have not heard from the the Boston Marathon bombings suspect regarding his motivations and intent.    I have not addressed--I cannot--my questions, or feelings with him.  Only in prayers seeking understanding have I done so.
     I believe he might describe some failing in his upbringing that led him to his actions.  Failings in his perceptions of given aspects of his upbringing.  Economic situation.  Family dynamic.  Social interactions in the community.  Experiences and influences of formative years--of current worldview, have overridden any belief in his power to learn from his experiences and influences, and dedicate himself to others not experiencing the same situation.
     Two caveats.  First, the actions--the intents--of the individuals or groups credited with causing the negative experiences and influences must be separated from the individuals or groups credited so credited.
    Second, condemning other human beings for any action overlooks a fundamental reality.  We are all human beings created with enduring frailty.  As hard as we may try, we cannot escape the fact we fail our potential.
    Our enduring human frailty is not an excuse, or a justification for acting with intentional failing--from intentional failings.  Intentional failings that rise to the threshold of criminality must be treated as such.
     We must strive to achieve to our human potential--forever and in all ways.  Failing to do so is the ultimate intentional failing we may commit with our lives.

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?

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.

The Papacy...Physical Vulnerability....

     I am a Catholic.  Vacationing left me to Pope Benedict XVI's resignation only last week.  Acquaintance with likely papal candidates is now my undertaking.  Not experienced in church matters, nary a neophyte to this process.
     Who might lead the Catholic Church next?  What are his perspectives?  His visions?  What of his person-as a human being, not as anything theologically, or hierarchically?
     Learning about the selection process of bishops--according to Canon Law--is a filter for my own views--educated in the possible while open to the yet-to-be lived.
Contemplating possibilities is a passion.  Cynicism is a toxin I do my best to avoid.
     Theologian Thomas Reese provided a questionnaire sent to bishop candidates seeking basic information about the candidates to be used in decision making.
     "1. Personal Characteristics:  Physical appearance, health, work capacity; family condition, especially regarding any manifestations of hereditary illness."  [Thomas Reese, Archbishop:  Inside the Power Structure of the Roman Catholic Church, Chapter 1, pp.20-21.]
     I do not know if the questionnaire is used currently or not in the selection of bishops, or other church leaders, such as the Pope.
    Among attributes polled was "physical condition."  Living with cerebral palsy, epilepsy, essential tremors, and osteoarthritis, I am attuned to the "physical condition" aspect of evaluating church leaders.  Thomas Reese noted that "physical conditions" could be used  to disqualify men from consideration to be a bishop.
     Papal selection is a more secretive process to say the least.  Yet, I am called to evaluate the current papal selection process by Reese's "physical conditions" revelation.  John Paul II was noted to have Parkinson's Disease only in his death certificate.
     I am led to wonder.  If disclosure of "physical conditions" were the norm, who might be selected Pope?
What might physical vulnerability bring to papal leadership?
    Papal wish lists are being proffered at the pace of children's Christmas letters to Santa in December.  Many Catholic papal wish lists to the College of Cardinals at the Vatican include leadership on vital issues, such as:
    1.  Clergy sex abuse
     2.  Financial accountability and transparency
     3.  Married priests
     4.  Women's ordination
     These are but a few of the issues put forth.  All are vital.  I defer to other advocates more experienced than I to speak to these and other valid issues of concern.
     No litmus test on a single issue will lead to selection of our next Pope.  The most effective leader is a man who understands these issues.  I pray we may have a Pope receptive to Catholics, and individuals of all world religions of diverse perspectives and convictions.
     Within that context, may the College of Cardinals be open to a man who is vulnerable in spirit, compassionate in heart, mindful of understanding, and receptive in manner of being.
     Physical condition should be no more a positive selector of a new Pope any more than a negative disqualification to be Pope, or a matter seen worthy of no more note than a death certificate--as with Pope John Paul II's death certificate.
    What might the result--the possibilities--be if we opened the papacy to an exemplar of vulnerability?  What might the result--the possibilities--be if we opened the papacy who a man who understands being brought to his knees, literally, by his own vulnerability?
    [I was witness to breaths held by the physical vulnerability of a priest at Easter time.  Would the priest be able to uphold his priestly duties in his physically compromised condition?  Yet, that priest's physically vulnerable presence at Easter intensified his message far more than any words could ever have done.]
    Others offer themselves as the champions of clergy sex abuse issues, the advocates for financial accountability, the proponents of married priesthood, or the pioneers for women's ordination.  I give voice to  vulnerability--physical vulnerability.
    How might physical vulnerability humble our next Pope to understand the diverse issues, needs, and hopes of Catholics and other world citizens?  How might physical vulnerability of our next Pope reveal to each of us to live with our own vulnerabilities as human beings?

A Keen Ear. An Accommodating Spirit.

     Little scares me.
     Fearless I am not.  Fear I do.
     Osteoarthritis.  Puffy fingers. Inflamed tissues.
     Some have knobby knees.  I have knobby knuckles.
     I fear not the appearance.  Such is vanity--pure vanity.
     I fear the knobby knuckles--its killing paralysis.
     I fear loss.  I fear loss of my voice--loss of my voice through my left hand.  I fear not the loss of my right hand--the loss of my right hand as the instrument of my voice.  My right hand has never had such muscle power.
     My osteoarthritis affects my left hand, my left hip, and my right ankle.  God only knows as to its selectivity within my body.
     I do not ask--I have never asked--"Why me?"  I abhor that question.  What possible answer could serve anyone or any good end.
     Rather, I ask, "What lesson am I to be learning." 
     I take this as no punishment for any action I have taken.  Some, extreme in their thinking, take that tack.  I never have.  I never will.
     Rather, I ask, "What preparation am I being called to make?"
     A lifetime ago my answer to a call seems.  Just one year ago, I was counselled to look ahead,
     "Think of your needs beyond the next year--beyond the next five years.  I advise you to get a power wheelchair with a joystick on your left armrest.  I advise you to get a head rim.  At the point when you need it, a head rim will control the movement of your chair when  you cannot."
     I do not torture myself--I cannot--with the prospect of using the head rim.  Yet, I know that I have learned that lesson--made that preparation.
     Osteoarthritis.  My left hip?  A simple four-legged cane.  Common sense born of experience--carry no heavy packages, such as groceries, any distance.  A fairly easy solution.  For vanity, two canes.  One is multiple shades of dark blue.  The other is colored in shades of brown.  It looks like wood.  One must be color-coordinated, of course.  Living alone, one must be prepared.  Though not needed today, I need to have the tools at hand--the tools for as independent a life as is possible.
     Osteoarthritis.  My right ankle.  Zoomer, my power wheelchair, is my antidote.  Should she not be enough, I have been told that it is a matter of time--ten years perhaps--that I might need ankle surgery, an ankle replacement, perhaps.
     Osteoarthritis.  I do my best not to torture myself with eventualities.  Osteoarthritis is not a condition of steadiness or control.  Osteoarthritis is an amoeba, a chameleon.  Some days, people may wonder, "I don't understand.  I saw her in her wheelchair yesterday, now today she is walking just fine."  I wonder too.
     Osteoarthritis.  A snake, who lurks in the bushes, waiting to catch me unawares.
     Osteoarthritis.  Exercise.  Not a physical cure.  But a wellspring of mental, and emotional energy.  Exercise.  A keeping at bay of inflammation's paralysis.
     Osteoarthritis.  My right ankle.  My left hand.  My left hip.  My color-coordinated canes.  Exercise.  Osteoarthritis.
     Osteoarthritis.  A keen ear.  An accommodating spirit.  Osteoarthritis.

Zoomer Chronicles: A Door Opens

     Just now, I responded to a survey from Macy's.  I left my name number, and my willingness to address a problem.
     Several months ago, Zoomer and I tried to leave Macy's Department Store.  First, Zoomer had great difficulty navigating the clothing racks that masked the handicap door open button.  Once we found our way through the forest, we wheeled back to the door to exit the store.  Before we could get out safely, the door started to close on us.    
    We were stuck.  I sat there for a bit.  How is the best way to move?
    Slowly and deliberately.  Slowly, I back up.  I press the button again.  We hurry to get back into position.  We got through the door.  But, I was scared. How much I can I trust this door?  How much can I trust this door to get outside?
    I recognize that Zoomer and I have been together since mid-April of this year.  Many, many individuals have navigated these issues for years.
    There is a balance to be found between being frustrated, and seeking a constructive resolution.  I think I am closer to the constructive-resolution end of the continuum.
    Wintertime.  I don't know whether I will move more toward frustrated end of the continuum, or beyond frustration.  Memories of last winter--last winter's snow, particularly--concern me.  I don't know whether I will be able to get out.
   I don't want to become embittered by fear, and be blinded to the glory of a fiery red maple tree.

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?

Zoomer Chronicles: A Fine Line

     This morning, I ventured out to review problematic intersections and issues in Downtown St. Paul.  The adventure heightens my attention to several facts.
    After having three drivers cut in front of me in controlled intersections--in a period of two weeks--it seemed I needed to draw attention to the overlooked safety issues. I want to be prepared for the yet-to-be scheduled time with a television producer to highlight--to focus, literally--attention on public safety issues.
     Several personal facts have come to light in recent days.  While I do what I can to highlight public safety issues for others, I need to combat internal issues.
     First, I have retreated from a healthy pace of travelling within the downtown area.
     Second, timidity and fear replaced determination and confidence--not riskiness, but confidence.
     Cooler weather intensifies my concern that I will be isolated by poorly-shoveled sidewalks, and ice.  I need to back up.  This will be my first winter with Zoomer.  Questions abound.
    What are Zoomer's intended capacities in the outside during wintertime?  Am I realistic to expect that I might have some outside travel capacities during the winter?  What will my limitations be?  What accommodations are open to me?  Are there additional safety precautions that might improve, or extend my capacity to travel outside during the Minnesota winter months?
    I know that I should not expose Zoomer to rainy weather.  I know that I should not expect to navigate ice.  
    I know that Zoomer can--will be able to--navigate the skyway system during winter months.  [The skyway system is a Godsend.  The system of enclosed walkways between downtown buildings--walkways located on the second floors of buildings--do wonders in curbing a paralyzing isolation that would occur otherwise.]
     As wonderful as skyways are, it is extremely important to get outside--to be exposed to the sun--to all elements of the out of doors.  Oddly, prior to Zoomer, having to be outside was not an issue, or priority for me.  I took for granted my capacity to get outside and be outside.
  Interesting what it takes to challenge one's values, and priorities.  Coming days and months will clarify what, if any realignment of values, and priorities occurs.

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.

Epilepsy Chronicles: The Other Side

      I turned the corner.  Sixth and Cedar Streets.  The 14B bus stop.  I have arrived.  1:30 P.M.   I am ready.  A 2 P.M. appointment with my college adviser.  My purpose?  To enroll in a pastoral ministry program.  I am prepared.
     As I round the corner, a man in his mid-60s is struggling to stand up an unresponsive woman from the ground.
     "Is she having a seizure?" I ask.  I know the answer.  I need my question's time to marshal strength.
     Is she having a seizure?  I think she is having a seizure.  This is strange.  Not unfamiliar, but strange nonetheless.  Never have I been on this side of a seizure.
     I grabbed the older man's arm firmly.
     "She seems so helpless.  Are they ever going to get here?" the man cried plaintively.
     "Let the woman sit here on the bench.  The police are on their way.  I know it seems like a long time...
      You have no idea how much I understand...the time warp...I understand...seconds seem like minutes...minutes seem like hours...I understand...believe me, I understand.
     Several minutes later, help arrived.  Finally, help has arrived.  She will be safe now.  The paramedics arrived.  She will get medication in her bloodstream immediately--anticonvulsants.  They will minimize recurrence of such seizures.
...
     Moments later, the 14B bus arrived.  I was off to meet my college adviser.  I was off to explore enrolling in a pastoral ministry program.
     I boarded the bus.  I sat down.  Suddenly, tears came streaming down my face.  I lost my composure completely.
     My witness at the bus stop was no accident.

ADLs: Activities of Daily Living

     The term activities of daily living, or ADLs, refers to the basic tasks of everday life, such as  eating, bathing, dressing, toileting, and transferring.  When people are unable to perform these activities, they need help in order to cope, either from human beings, or mechanical devices.
         Measuring the Activities of Daily Living:  A Comparison Across National Surveys
         Joshua M. Wiener, and Raymond J. Hanley, The Brookings Institution; Robert Clark, and Joan F. Van Nostrand, U.S. Department of Education 
     I was paralyzed.  EAT. FEED YOURSELF WITH FOOD THAT HAD BEEN PREPARED FOR YOU. VOLUNTARY BLADDER AND BOWEL CONTROL OR ABILITY TO MAINTAIN A  REASONABLE LEVEL OF PERSONAL HYGIENE.  BATHE (TUB, SHOWER, OR SPONGE.)  TRANSFER FROM BED TO CHAIR.
     I was paralyzed.  These words screamed out--pierced my eardrums.  Though still able to perform these tasks with some adaptive devices, the day I could not perform any of these skills came into focus.  Though not imminent, a potent image nonetheless.
     Breathe in....breathe out...breathe in....breathe out...
     Stark are the activities of daily living on paper before my eyes--they were then, they remain so.  Before assessing these activities, my pierced ears must be muffled.  My jangled nerves quieted. My tight stomach calm.
     Eat.  Feed yourself with food that had been prepared for you.  Voluntary bladder and bowel control  or ability to maintain a reasonable level of personal hygiene.  Bathe (tub, shower, or sponge.)  Transfer from bed to chair.
     A scale.  Rate myself.  Simple.  Or so it seemed.  Straightforward.  Or so it seemed.
     1.  I can perform this activity regularly.  2.  I can perform this activity with the use of equipment or adaptive device.  3.  I cannot perform this activity.
     The activities of daily living are the province of a child to learn.  I am an adult.  Diminishment is the province of senior citizens to accept.  It is a realistic expectation that senior citizens should need equipment or adaptive devices.  It is within reason to watch someone else confront diminishment.  Senior citizens learn that they "cannot perform this activity."  Or so it seems.  Yet, I am not a senior citizen.  I am 51.
     Were these my only choices?  Could I take an essay test?  A multiple choice test of a life lived proving false the truths set before me to live.  Yet, those were my choices.

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: The Other Face

     Some coworkers feared I might have a seizure on command.  Others feared it happening in their presence.  I understand.  Being out of control of my body in my mind's eye.  I understand.  Yet, not moreso than when I happened upon a seizure of a man awaiting a bus. 
     "Focus on the positive, and ignore negative behavior,"  Mom chants in the deep reaches of my memory.  From my earliest memory, "Focus on the positive, and ignore negative behavior."
     I understood what he needed.  Not medically.  Yet, I knew what help he needed from the many helpless people who surrounded him.  I knew the helpless individuals, who surrounded him, were far from helpless.  While others surrounding me were viewing their first seizure, I was on the other end of the seizure.  I understood what he needed.
     I had never met the seizing man before witnessing his seizure.  I have not seen him since that day.
    Yet, I was given a voice--words to speak---for a reason.  I am not committed to vengeance against other individuals.  Yet, I can and must commit myself to positive vengeance against the excessive electrical energy in my brain, the root of my disabilities.  I can and must be the human irritant--the nacre--that contributes to pearls of understanding.  

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."

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.

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.