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?

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.

Victims. Entitlement.

"There are 47 percent of the people who will vote for the president no matter what. All right, there are 47 percent who are with him, who are dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it -- that that's an entitlement. And the government should give it to them. And they will vote for this president no matter what. ... These are people who pay no income tax. ... [M]y job is not to worry about those people. I'll never convince them they should take personal responsibility and care for their lives."
                                                                        Mitt Romney
     I do my best to steer clear of political commentary.  Excessive ranting, raving does grave injustice to the issues that demand our attention.
     But...
     I must speak out against Mitt Romney's broad strokes.  You see, some may say I am within the group of which he speaks--not completely, but, sufficient to respond.  I no longer work.  Although I do pay taxes.  I receive SSDI.  I am covered by Medicare.
     Some may say, "Don't take Mitt Romney's words personally."  I must.  The only way I know to live is personally.  If I do not live from my personal experience,  then, I have nothing to offer this world.
     Oxford Dictionaries defines "victim" as, "[noun] a person harmed, injured, or killed as a result of a crime, accident, or other event or action."
      If you define "cerebral palsy," as a result of the event of my birth, then, yes, I am a victim.  However, "victim", when spoken in common parlance, has a heavy burden of pity that exceeds its dictionary definition.  I do not include myself in that group.
    "Personal" is defined as, "adjective.  of, affecting, or belonging to a particular person rather than to anyone else."
    "Responsibility" is defined as, "the state or fact of having a duty to deal with something or of having control over someone."
     I do what is within my power to take responsibility to care for myself--for the impact of "cerebral palsy," "osteoarthritis," "epilepsy," and "intentional tremors."  I take medications twice daily.  I swim three to four hours a week.  I use a straw to drink--to counteract a tremor-laden hand.  I adjust the arrangement of my home to accommodate my physical capabilities.
    Dependent?  Yes, I am dependent.
    I don an ankle-foot-orthotic--a leg brace--daily.  I use an electric wheelchair when traveling long distances.  I submit to lab tests to evaluate the amounts of medications in my bloodstream.
    Dependent?  Yes, I am dependent.  Everyone is.
    But...that is not the whole story of who I am.
    I do give back.  To my family.  To my friends.  To my church.  To my community.  As I am able, I do give back.
    Research.  Writing.  Listening.  Advising.  Advocating.  Volunteering.
    Entitlement is defined as, "the fact of having a right to something."
    Entitlement.  Respect?  Yes.  Respect--basic, human respect.  That is the Entitlement that I offer each individual I meet and know.  That is the Entitlement I expect from others.

Neat Handwriting

     "Based on the handwriting, I know it is yours.  But, I have no idea what the paper says," my high school teacher said offhandedly.
     I laugh.  What else can I do?  What can I say?  I love school. I want to do well.  How hard did she try to read my handwriting? Is it just an excuse?
     I don't mean to be--I don't want to be--defensive.  But, tell me, "What constitutes neat handwriting?"
     ...
     I have had a wonderful weekend at Lake Superior.  How can I express my thanks for our time at Bluefin Bay?  A poem!  Yes, a poem.  Ode to Bluefin.
     The words flow from my mind.  While on the bus home, I craft the poem in my handwritten words.  Carefully shaped letters.  Carefully drawn between my ode's stanzas?  Hand-sketched bluefins.
     The words are written.  The bluefins sketched.  The ode complete.  My gift is ready to present to Mom.
     "Thank you for the poem.  I want you to know, I typed the poem, 'Ode to Bluefin,' and I framed it."
      I don't mean to be--I don't want to be--defensive.  But, can you tell me, "What constitutes neat handwriting?"
     ...
     Diagnosed.  Intentional tremors.  Cerebral palsy.  Diagnosed.  Long-term disability.  Certification questionnaire.
     "Itemize what you do from the time you wake up, until you go to bed at night."  "Address the envelope, and return it to our office."
     "I will type the form, so that my handwriting does not interfere in the message of my need."
     "No, complete the form in your handwriting, so that they may see your need."  Such was the essence of my family's advice.
     I don't mean to be--I don't want to be--defensive.  But, can you tell me, "What constitutes neat handwriting?"

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."

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.

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.