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

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.

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.

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.

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."

I am Praying for You

     I made my way up the skyway ramp home.  The hour was late.  The day long.  My arms laden with groceries.  The security door awaited my opening.
    To my rescue, my neighbor came.  Seeing my need, she opened the door.  Poised to say, "Thank you," she stopped me.
     "I am praying for you."
     "Thank you," I said with little thought.
     Wait a minute.  When did I bare my soul to you?  What did I say?  What is your intent?
     Prayer--seeking or receiving prayer were new--foreign--to me.
     "Is it getting any better?"
      No.
     Well, nasty or not, it was true.  I didn't think I had a degenerative disability.
     "Is it getting any better?
      I don't know.  Better than what?  I have cerebral palsy. I have had it all of my life, so, is it getting better than what?

Spirituality of the Human Body

     Respect.  Body Parts.
     What on earth do these two phrases have in common?  Contrary to what you may think, a great deal.
     But, before I go further, let me establish what I will not be addressing.  First,  respect--respect for life--in its common parlance is beyond my call--abortion.  I have my views.  I respect those of other individuals with differing views than mine.  I am open to expressing, and exchanging those perspectives.  Yet, my call is to convey my thoughts in a different direction.
    Respect for life--respect for the life I have been given to live.  That is my call.  That is what I pray I will voice today.  Yet, that is a broad, unwieldy scope to address.
    Body parts.  Body parts? Yes, body parts.  How is that remotely connected to respect for the life I have been given to live?
     Once again, let me establish what I will not address--what I do not mean.  I do not drive.  I have no knowledge of auto mechanics--I have no knowledge of automobile body parts.  That is not my call.  I am called to a different direction.  I am called to convey my thoughts regarding human body parts.
     Private parts.  Betrayal.  Disability.
     I am not writing about private parts, per se.  The term is understood--there is an established definition of the term.  I do want to include the term in the context of our human body parts.  I have never heard reference to, much less definition of what might be called public parts--public human body parts.
    We have no understanding of how our bodies serve the rest of us--our mind, and spirit.  We do not attend ourselves to how we honor our body parts.  How do we serve our body parts?
     In recent years, I have been called to respond to these questions.  Until recent years, my right hand did little to serve me.  Never have I had, or will I have fine motor skills in my right hand.  Never have I known any other way to live, so that has required little adjustment of me.
    My right ankle, and my left hand are another matter entirely.  Osteoarthritis in my right ankle caused me to ask--how does my ankle serve me?  It took many months for me to reconcile the fact that my right ankle could not serve me.
    My left hand has been my lifelong workhorse.  She has been called to make up for the many times when my right hand could be of no service to me.  I am scared by little.  Yet, the onset of what I now know to be intentional tremors in my left hand rendered me speechless--a feat for anyone who knows me.  Intentional tremors.  The more I intend to do a given task when I am nervous, the shakier my left hand becomes.
    Intentional tremors made essential the honoring of my body parts, and their service to me.  I took for granted that my left hand would be at my service, at full strength, throughout my life to meet whatever need I had.  Intentional tremors called my right arm and hand to service, as a steadying force.
     Intentional tremors were the sign of the first part of spirituality of the body--spirituality of my body.  I had to identify--I had to come to terms with--what my body parts could do.  How could my body parts serve me?  That was the first step.
    Honoring my body parts.  What does that mean?  What does it call me to do?
    When I honor my body parts, I must humble myself.  I must confess, "What is it that my body part can no longer do?  Honoring my body parts, committing myself to confession is not the end.  It is the second of a three-step process that continues throughout our lives as we age.
     We argue about terms regarding people whose bodies do not function as most people's bodies do.  Yet, we have not elevated our understanding to a betrayal of our human body parts to our minds, and  spirituality of the human body--the spirituality of our human body.  The closest example of spirituality of the human body may be found in the writing of theologian Jean Vanier.  If you have never read his writings, I commend him to you.
      But, the writing of Jean Vanier does not go far enough.  Or, how we read Jean Vanier does not  challenge us to examine our own bodies as worthy of having spirituality appended to it.  We can separate his comments and compartmentalize them as applying to the residents of L'Arche, and no one else.  Whenever we receive communion, we speak of the Body of Christ.  Yet, we do not bring our human body to communion with us.
    Clinical inventory of our body parts.  Physicals, medical tests, and other medical examinations require of us little more than to go skin deep.  That is, in and of themselves.  Yet, if we are wholly attuned to our human body parts, we are called to go much deeper--far deeper than skin deep.
    Glorification of the body.  Glorification of the body may be found in two different places--in the media, and in fine art.  Glorification of the body may have positive or negative impacts in the media or in fine art.  Both need our attention--our open-mindedness.
    Spirituality of the human body...spirituality of the human being.
    How can we ascend to--advance to--a spirituality of our body parts--a spirituality of our human body-- if we separate our human body as we enter the door of the church, or if we separate the whole notion of spirituality when we open the door to leave the church?
     Can we read Julian of Norwich and choose to engage in some form of spirituality regarding our human body?  If we accept the invitation Julian of Norwich offers us, can we develop a spirituality of our human being?  I am not saying that it is necessary to go as extreme as Julian did.  That is not the point. .Yet, are we willing to go further than we have  gone up until now?  I continue to press the issue, because I believe it is possible--it is essential.
    Respect. Respect for life.  Respect for the life I have been given to live. How does my body serve me?  How may I honor my body?  How may I serve my body, so as to preserve and honor her gift--her gifts?  Am I willing to commit myself to pursuing a spirituality of my human body--a spirituality of my human being?

Zoomer Chronicles: Damn Door Opener Buttons

     Given the choice, I much prefer doors equipped with handicap door opener buttons than those without them.  That said, let me go on record as saying that not all door openers are created equal.    

      Equality of door openers consists of four components--The side of the door on which the door opener is positioned, the proximity of the door opener to the door.  Is the door opener located right on the door, or is the door opener located on the left side?

     My judgment of equality is skewed by two  facts.  I tend to forget about both--both have been lifelong physical companions.  I do not have full use of my right hand.  I do not have any fine motor skills in my right hand.  So, although I can use my hand as a support for my left hand, I cannot use it for any manipulative purposes.  I tend to forget that I do not have good peripheral vision on my right side.  So, as far as Zoomer is concerned, that fact has been responsible for three accidents on my right side.

     While learning to navigate door openers, and elevators, I gashed the right armrest of Zoomer.  Following several gashes, I hit the armrest once again--for good measure.  The last time, as though in slow motion, the gash in the armrest looked more like a cavernous divide.  None of those times did I suffer any bodily injury.  That made the gashes, or cavernous divide more palatable.

    On Monday, I was reacquainted with an old friend. I have made a concerted effort to ride outside with Zoomer.  I have done so for a number of reasons.  First, while the sidewalks are free of snow and ice, I want to gain confidence in what and how much Zoomer and I can do together.  Secondly, I want to improve my indoor navigational skills in more confined spaces by improving my general navigational skills in a less demanding--less confining--space.

     Handicap door openers.  There are extremes.  The creme de la creme of handicap door openers is the Minnesota Children's Museum's front door.  You wheel up to the front door--to the right side of the front door--and press the handicap door opener.  Within seconds, both the right and the left doors open to make way for your entrance.  Talk about having the doors opened for you.

    Yesterday, I met up with an old friend.  My absence from using this door opener did not bring me fondness toward him.  Who is he?  I don't know his name, but he is located on Wabasha Street close to Seventh Street in St. Paul.  He is located in the heart of  St. Paul.  I had forgotten that his door opener button was located on the right frame of the door, rather than on a pole in front of the door.  

    Usually, I have my right arm folded at my elbow in my lap.  Well...on Monday I did not.  That fact, combined with the position of the door opener meant that I did not allow enough room on Zoomer's ride side to clear the door.  My right pinkie finger took the door full force.  Ouch.  It was a painful lesson to be much more cognizant of my right side, and much more cognizant of door opener button positions.

     Damn door opener buttons. 

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.

Understanding's--Compassion's---Scope

     The wait for a wheelchair continues.  Work with the vendor of the wheelchair, and the insurance company advocate continues.  The need is unrelenting.  The work seems without end--without a tangible result.
     I am a reasonable, logical, peaceful woman.  I am not comfortable being aggressive in stating my proven needs--my proven need.
     Friends, family, and acquaintances recognize my need, and offer the compassion ever so helpful as I strive toward my goal--a wheelchair.  I never imagined--I resisted--my need for a wheelchair.  Time, and my ankle convince me otherwise.
     I try to draw on my natural tendencies to achieve my goal--a wheelchair.  Logical.  I identified the steps necessary to secure a wheelchair.  An accounting of my physical symptoms, and capacities, a doctor's mobility assessment, an insurance company advocate, a medical vendor acceptable to the insurance company.
     Reasonable.  I listened to the doctor's recommendations.  I spoke with the insurance company advocate.  I visited the medical vendor.  I tried wheelchairs likely to meet my needs.  I maintained constant contact with the advocate, and the medical vendor.
     Aggressiveness expresses itself in cries of desperation from me.  Threats to change vendors.  Yet, aggressiveness, and threats help no one.
      Working to secure a wheelchair in the last three-and-a-half months lead me back to a lifelong question.  First, is it reasonable to expect that another human being may understand basic human needs, and life circumstances that may not be their own?  Second, is it true that no one may understand my/our human needs, because my/our life circumstances are not theirs?
     I am either a foolish optimist, or an optimistic fool.  Maybe both.  I hate to think that none of us may understand the basic human needs of another person, or persons, because our life circumstances are different--are not identical.
    Is it possible to surmount seeming indifference to those basic human needs?  If so, how?
    My default has been that indifference is surmountable.  I begin with logical appeals.  I resort to emotional appeals.  I seek support, and reinforcement to identify, and pursue other courses of action.
    Then, I wonder.  If my need is not enough--if the need/needs of the individuals for whom I am advocating are not enough--then, how can I appeal to the self-interests of the indifferent party?
    I am far beyond angry.   I am exasperated.  I am exhausted.  I am depressed.  Yet, none of these strategies, insights, or feelings has rendered a wheelchair.  Anger, exasperation, exhaustion, depression serve no one.  They are not effective conveyors of my emotions to the people who seem to have the resources to meet my needs.
    I wonder about the appearance of my need.  I am extremely grateful to be able to navigate my condominium.  So, to anyone who observes me navigate just short distances, they would surmise that my need does not rise to their requisite threshold.  Yet, anyone who has known me for any length of time--before I stopped working in 2009--they would know that I do not whine.  I do not pull the pity card--the victim's vengeance--in my daily dealings.
    How do I communicate the need that exceeds my immediate home environment?  How do I communicate that my need in a dignified manner?  Does pity need to be the weapon I must use to get my needs met?  I am no victim--by nature, I am no victim.  Yet, indifference is victimizing me unnecessarily.

Crippled

     Nancy Mairs describes herself as crippled.  She is affected Multiple Sclerosis--significant aspects of her life.  Upon first reading her explanation regarding crippled, I cringed.  Childhood calls of "crippled" returned in an instant.  Mairs was clear.  She was not--she is not--prescribing the crippled label to all whose lives are in some way different from "normal,"  whatever "normal" is.
     I do not aspire to crippled certification, nor to being a cripple.  Yet, I respect her use of the label.  I understand the moment's hold it has on the body--on the mind.  Without aspiring to be crippled--to be a cripple--I must not run away, on my way to a different word, from the moment when crippled is the precise word that defines my moment's state.  Never did I imagine I would make such a statement about crippled, yet, it describes my current understanding.
    I am Patricia Ann Thorsen.  My family, my friends, and I call my self  "Patty."  Loss of stamina--loss of muscle tone--have brought me to stages I call physically challenged, and mobility impaired.  Yet, those terms do not encompass sufficiently the physical parts that are due to my cerebral palsy, and osteoarthritis.  I, like many people of a certain age, grew up as crippled, then handicapped, and then disabled.  I still describe the physical aspects, which have informed my spiritual self--my entire being--as disabled.  I do not mean to imply that disabled suffices to describe my entire being.
   I do need to be quite clear about my jigsaw puzzle pieces--crippled, handicapped, physically challenged, mobility impaired, and disabled.  Other jigsaw puzzle pieces well may enter my vocabulary--wheelchair user, wheelchair bound, confined to a wheelchair.  I do not think the latter two will define me, when I do get a wheelchair, and begin to use it.  Yet, in matter of fact, they will.   I pray that I will not run from the words before I become an intimate partner with my wheelchair--if she ever comes:)  This must be a journey, if I am not to fall victim to a wheelchair.
     I have no idea where this journey is headed--where I will travel.  Just as I had no idea of where I would arrive at the end of this posting, when I started writing it.

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.