If My Life Was Perfect...

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

My Subconscious View. Me. LTD. SSDI.

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

A 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.

Relax...A Time for Joy. A Time for Sorrow.

    The premise of  Patty's Ponderings is to reflect on the fast-paced, deadline-driven world in which we live.  My disclaimer?  I am no longer in the work world.  Sometimes, I feel guilty that I am not offering my nephews an example of a good work ethic.  Yet, as my mom says, going swimming--strengthening my right arm, and preserving my right ankle as much as is possible--is my job.  I do not mean that my swimming is drudgery, as the work world often seemed to me to be.  My swimming is challenging.  Yet, it is rewarding--very rewarding.
    But, I digress.
    This morning, I went to work.  Zoomer and I left to swim at the YMCA.  Fifteen minutes after leaving home, she and I arrived at the pool,.  During those 15 minutes, I encountered two people engaged in my pet peeve--engrossment in their electronic devices.  First, a man in his twenties stood at the end of a switchback--an accessible ramp--engrossed in a conversation with someone.  Later in our travels, Zoomer and I met up with an attractive, blond woman dressed in a gray business suit, and a fuchsia blouse.  The blond businesswoman's head was buried in some electronic device.  Zoomer is my silent business partner.  Thus, while the electric wheelchairs of some people make noise that alerts people to their presence, such is not the case for me.  The businesswoman was so engrossed in her electronic encumbrances that she did not see me coming.  I spoke up.  We parted ways.
     Such encounters lead me to wonder--to ponder.  What is so important that we miss in our surroundings--people, beauty, and all that life offers?  What do we miss because of the magnetism of electronic devices?  Complaints are made that no one has time to relax anymore.  I challenge the premise.
     No one has time to relax anymore?  No.  That is wrong.  They do--we all do.  It is a choice.
     I confess that I am addicted to my computer.  I communicate with individuals living on other continents.  But, as much time as I spend sitting at my computer, I am not its slave.  Though my contact with people is radically different from my working days, such is not all bad.  I make choices.  Essential to engaged living is circulating with people every day.  Circulating without tether of wires, ear plugs, or other such appendages.  Be it the grocery store. the Y, the Children's Museum, or wherever I find myself, full attentiveness to the people I encounter, meet, and know is vital.  May  I help them?  May they help me?  May we share our joy?  Or are we called to share our sorrow.  Joy is not happy.  Sorrow is not sad.  Happy and sad are nothing more than superficial ways of gasping for air.  Joy and sorrow call us to inhale...to exhale--to live fully.
    Take time.  Take the time.  Read Ecclesiastes 3:1-15.

Wheelchair User Has An Urgent Message for Drivers

Patty Thorsen just wants to exercise, go to the library and volunteer in her community.  But every time she leaves home, Thorsen feels like she's taking her life in her hands.  She asked 5 EYEWITNESS NEWS to come along for the ride.

Thorsen may be headed forward, but when we watched her crossing Seventh Street in Saint Paul, her eyes were aimed directly at the cars approaching from her right.

"I try to make eye contact, talk to them," she said.  Her goal, making sure drivers see her when she's in the crosswalk. "I just have to trust them."

But Thorsen's trust is wearing thin.

An illness forced Thorsen to start using a wheelchair last spring so this is brand new to her.  She contacted us, saying she's had many crosswalk close calls over the past six months.  So we went with her, watching her cross street after street.

In less than two hours, we saw several examples of drivers cutting through the crosswalk while Thorsen was still in it.

"It scares me!" Thorsen told us.

At one point, a large box truck accelerated, ducking just behind her.

"Sometimes drivers think that I'm not going fast enough," she said.  She wants to tell them, "Hey!  You've got my life in your hands!  You're a lot heavier than I am!"

"Whether that's a marked crosswalk or a corner or an intersection, a pedestrian has the right of way," said Officer John Keating of Saint Paul Police.  In other words, if there's a person anywhere in the crosswalk, drivers have to stay back.

"Being aware of your surroundings and certainly being as visible as possible is certainly something pedestrians can do to keep themselves safe," added Keating.

But even with an orange flag flying above her chair, we saw, time after time, drivers skirting around Thorsen.

"That does create a safety hazard," said Keating.

It makes Thorsen angry.  "I wanna swear and I do swear at them."

Her patience is wearing thin. She hopes drivers will see this story and give her and the thousands of others like her a little more space.

"I can't just stay inside because I'm afraid of somebody running me over."

Click here for crosswalk laws and safety tips from the Minnesota Safety Council.

Click here for crosswalk laws and safety tips from the Minnesota Safety Council.

Zoomer Chronicle: She Rides Again

     Zoomer rides again.  With television cameras in tow, Zoomer and I rode again today.
     We had better success, if you can call it that.  I am a masochist, so I do:)  Evidence of such is the driver who cut in front of me, who I gave the evil eye as I was crossing.  Once I was safely on the sidewalk, I mouthed, "Thank you!"
     The producer and photographer positioned themselves across the street from me.  Together we documented four drivers, who cut in front of me.  The producer indicated that one driver had Illinois license plates.
    An unexpected twist left me feeling a tad embarrassed.  I crossed Seventh Street on Sibley Street.  The intersection is close to the YMCA I frequent.  I proceeded across the intersection with little fanfare.  Then....unbeknownst to me, a woman in a wheelchair was behind me.  As I arrived safely on the sidewalk on the other side of the street, she was there.  The woman's presence surprised me.  I surprised her.  I turned to my right quickly.  My intent? To turn around and recross the street.  Neither of us was hurt.  She was surprised.  In an instant, any smugness I might have felt that I was bringing attention to an important issue changed to personal enlightenment.  I need to be deliberate in my travel, when I have deliberate intent.
     I do feel good about the way today's downtown intersections expedition went.
     Just now, the producer contacted me.  He said that the story will be aired sometime late next week.  I will keep you posted.  For local readers--Minneapolis/St. Paul, Minnesota--the story will appear on KSTP TV.    I don't know whether or not this will appear on the KSTP website.  Zoomer is hoping so.  [p.s. It did appear.  http://kstp.com/news/stories/s2317400.shtml]  After, not only did she appear on camera, but, she was a part of a brief interview.  She had fun.  So did I:)

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.

Zoomer Chronicles: Her Voice

     Zoomer is tired this evening, after an inspiring day.  Zoomer was fitted with a small camera on her armrest--on Lily the Lefty.  I was dressed with a small microphone.  Off we went.  Strange as it may sound, we encountered no incidents of being cut in front of, or the like.  Odd to wish for that to happen, yet, I wanted to provide the visual evidence to reinforce my point.
     The KSTP-TV producer, and cameraman did not doubt what I was saying was true.  However, all of us wanted to get some tangible evidence.  Perverse.  Truly perverse.
     Zoomer and I worried that I would be so nervous that I would forget what I wanted to say--what perspective we wanted to share.  We worried that information essential to wheelchair safety in traffic would be lost to nerves--that my information would be the victim of my jangled nerves.  As the sleepless hours dragged on, my worries intensified. [Intimate frieinds though we are, Zoomer sleeps in the living room, not in my bed.] Fixation on the route to follow finally succumb to unconsciousness shortly after 3:18 A.M.
      Zoomer and I took a last minute tour this morning.
     What route were we going to follow?  Would it work?
     Would there be some--enough--examples of me being cut in front of to reinforce my concerns?  Would I provide material worthy of their time and effort to tour downtown?
     What if nothing happens?  Are they going to be upset that I wasted their time?  Would they think that I blew the incidents out of proportion?
     Those were my early morning questions--my obsessions.

     Well...nothing happened--no incidents occurred during our tour. 

      So, nothing happened--no incidents.  Now what?
     Will they say, "Well, I am sorry.  We can't devote any more of our resources to this story.  Maybe if something had happened that we could photograph, we would be able to do a story.  Good to have met you.  Have a nice day."
     But...such was not the case.
     "Mike, I have run out of film.  What would you like to do?  Should we come back another day?....Do you want to do an interview?" the cameraman asked.
     "...What does your schedule look like?...I've got your email and number.  Mine is on my emails," the producer said.
      So, my questions were answered.  I guess we did OK.
     Zoomer and I conducted the tour, and narrated it splendidly.  Maybe there was too much narration on my part.  I am a novice to television interviews.
    Splendid.  Just splendid.

Zoomer Chronicles: Safety's Anger

     This morning, Zoomer met fraternal twins--Safety's Anger, and Anger's Safety.  Mirror images of one another, they are born of the same root.  Danger.  Fear.
     A return to swimming was my dear ankle's hope.  Pool maintenance.  Facility remodeling.
     A return to swimming was not to be.  Not this day.  Ankle's hope was dashed--dashed far short of 50 yards.
     An elevator.  Button pushed.  A short wait.  Doors opened. Zoomer wheeled in--turned around.  Facing forward.  Third floor's button pushed.  Ankle's Hope salivating.  Slow and crotchety though she was known to be, today, this elevator went nowhere fast.
     Door Open's button pushed.  As an accordion opens, so too the doors.  Yet, just as with a fast, bad polka, an accordion closes, so too did the doors.  Though Zoomer is learning to dance, the polka is not her step.
     Though armed with her cell phone--a Jitterbug, I kid you not--my ankle's hope kicked back at me.  Angry. With the weight of a bowling ball on her, my ankle's hope was to kick off her burden.  One more time, she implored me.  Third floor button, one more time.  Once again, Zoomer, my ankle's hope, and I went nowhere fast.
    Though Jitterbug tried to call to Ankle's Hope, she would hear none of it.  Take me home, Zoomer.  Take me home.
    Safety's anger. She prevailed.  Safety's Anger drove Zoomer and I out of Harm's Way.
    Though Ankle's Hope kicked high, she fell flat into Zoomer's lap.  No harm.  Just anger.  Frustration.  Door Open's button hit.  Zoomer and I sped forward.  To Safety, we arrived.
    No sign.  Out of Order.  No sign.
    Anger's safety.  Though Safety's Anger had spoken--rescued--now it was for Anger's Safety to speak.
To quiet solitude, find your way.  Let Anger rest, let Safety's Advocate cry forth in due time.
    Impatience overruled quiet solitude.   A simple report. "Your elevator is out of order."  
    "The elevator repairman has been called.  They should be out sometime today."
    Safety's Anger yet satisfied, though Logic told her she should be.
      "You are new to this world, there were many signs not posted before you.  Many signs will not be posted in years yet to come."
     Yet,"Where is the Out of Order sign--Safety's Warning?" was all this impatient soul could ask.

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.

Zoomer Chronicles: Zoomer Goes to Yankton

     Yankton?  Yes, Yankton, South Dakota.  Tonight, I received an email that took me back to Yankton, South Dakota--a speech I gave during college on the topic of handicap awareness.  Zoomer reminded me of Yankton.  In 1982, the speech I gave was the result of my audacity.  I made contact with someone I met at a conference addressing handicap awareness.
     A month ago, Zoomer and I were cut in front of by three different drivers during a two-week period.  The incidents led me to contact friends on Facebook to determine whether I was correct to think that I had the right to expect patient, yielding drivers.
     I was inspired to write letters to the editors of the StarTribune, and the Pioneer Press--the two local newspapers.  Then, I decided to send emails to local media outlets.
     Tonight, I was taken back to Yankton--to the audacity that led to my invitation to speak there.  Tonight, I received an email from a local news producer.
     It is odd.  I don't know yet how this will turn out, if anything is aired.  However, I never imagined myself speaking out regarding wheelchair use.  I resisted getting one, much less using one.
     We shall see what happens.  The preliminary talk is mounting a camera on Zoomer to get a perspective of travelling in a wheelchair--encountering the outside world.
     I don't know what Zoomer will show.  The image of where the camera will be mounted intrigues me.  The notion that Zoomer could open some eyes is exciting.  We shall see what happens.

Zoomer Chronicles: Much Too Close

To all drivers, stop and think.  Before cutting off wheelchairs in crosswalks, please think of the consequences--the potential consequences.  The people. The injuries. The lives.  All that might be affected--yours, mine, and others.  I am a careful wheelchair user.  I live in downtown St. Paul.  This morning, while crossing an intersection, I was cut off by a van.  The driver decided that my fastest pace was too slow.  The driver took my life in his/her hands.  I stopped.  Though stunned, I stopped.  My wheelchair stopped.  Thankfully, my wheelchair stopped.  I shudder to think what might have happened.  Did the driver ever shudder?  I will never know.  Long gone before any license number was in my view. With no hostile intent I ask, "How much time do you save by cutting in?  What consequences might befall you--befall others--if you do not honor the lights, and override the crosswalks."  I, for one, want to share the road with you for many intersections to come.

Zoomer Chronicles: Ramps...Buttons...Doors...

     One of the most liberating aspects of Zoomer is her capacity to go from my condominium to the YMCA's pool.  Four days a week, I start my morning by riding with Zoomer to the pool.
     Four mornings a week, I honor my right ankle.  After long discussions, and many arguments, my osteoarthritis and my right ankle won out.  No longer did she have the strength to stand by me each day.  After the dust settled, it was clear.  I needed an electric wheelchair.  I needed regular exercise to loosen osteoarthritis' hold on me--her inflamed ego.
     I swim one day a week for each month that I spent working to secure Zoomer.  I swim one hour a day to be of one mind.  I will not be fierce, and argumentative, yet, neither will I roll over and play dead.
      With Zoomer, I traveled to the YMCA.   I gave myself a birthday present.  I am known by name.  Jen, Jeannie, and Matt.  On guard, Lucy, and Collin, among others.  A fellow swimmer greeted me, "Hi, Mermaid."
      Elevated walkways--skyways--enable Zoomer and me to travel to the YMCA whatever the outside weather may be--snow, ice, wind, windchill.  During St. Paul's precious springtime, and summer, Zoomer cries to be outside.  That seemed a reasonable request.
       Ramps are common companions to stairs.  Just as stairs lead to doors--to open doors--so too should we expect of ramps to be.   On one summertime St. Paul day, I succumb to Zoomer's cries.  I pressed the door opener button, and readied myself to guide Zoomer down the ramp.
       Well...I must digress.  Minnesota does not have four seasons--it has two.  Winter, and road construction.  Particularly, a multiyear project to construct a light-rail transit system that will pass through downtown St. Paul.
      Having detoured, let me return to our journey.  Zoomer's cry, "Outside...outside....let me out...let me out..."  So, I pressed the door opener button.  So far, so good.  I positioned myself to go through the door without injury--without a nick, or crash.  Feat accomplished.  It was downhill from there on out.  Or, so I thought.  A orange-and-white striped sign made clear that I had met my match.  We needed to backtrack.  Zoomer and I needed to find another pathway.  Logic told us to turn around to go back inside the building, and traverse the skyways.  But, that was not to be.  We found no automatic door opener button on the outside door leading into the building.  Who would lead someone, raise someone's expectations of entering the building without ascending insurmountable steps?  I have yet to meet the person.
      With my first option a failure, we turned around again.  The hours of swimming--the strengthening of my left upper arm--proved quite helpful.  I re-examined the orange-and-white striped sign.  Fortunately, yellow sandbags secured the sign from a winds' power.  So, I exercised my muscle to lift the sandbag, ever so slightly, such that I could bypass the sign.
      The hijacker and I are in negotiations as to how to assert my needs without losing my inner calm.  Zoomer is grateful for my arm's strength.  I am too.

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.

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. 

Zoomer Chronicles: Rules of the Road

     Zoomer has asked that I share with you some basic rules of the road.  Zoomer has been very impressed with how cooperative everyone has been.  So, these rules of the road are short, and sweet.
     Pedestrians.
     First, do not block the curb cut, when you are stepping off the sidewalk onto the street.  Second, do not block the curb cut, when you are stepping on the sidewalk from the street.  Third, do not leave Zoomer lingering in the street behind you, because you are dilly dallying in the street.
     Drivers.
     Zoomer would love you if you did not park in front of curb cuts.  Zoomer won't report you to the park police should you choose to park elsewhere, and engage in other activities:)
     Automatic door openers.
     Zoomer means no offense if she declines offers of help.  She doesn't want to injure you.  If you are feeling offended, please look at the cuts and abrasions she has incurred, when she was trying to be gracious to you.  She is appreciative of your offers of help.  Righteous indignation messes with Zoomer's nervous system, so, she does not get riled up about anything.
    Elevators.
    Sometimes, Zoomer may need to refuse your invitation to join you in the elevator.  Sometimes, the elevator is too small for her to maneuver within the elevator.  She enjoys riding with you, when it is possible.

A Declarative Act of Living...A Defiant Part of Speech

     Make today a declarative act of living, not a defiant part of speech.
     These words were given to me on April 14, 2011, when I took ownership of a red Invacare FDX-MCG.  After hours of labor that enabled me to have a power wheelchair, I struggled.  I did not want to be victim of--a victim to--FDX-MCG.
     I am a woman of words.  I need clarity as my advocate.  FDX-MCG hardly fits the bill.
     Make today a declarative act of living.
     A declarative act is an expression of faith--a belief of what can be, if I will it.  Faith begins in prayer. I pray.  I believe it may be.  I will it. If it be, I pray.
     Do not be mistaken.  A declarative act of living is not a guarantee of a life as I want it to be.     
     Will.
     Will the faculty of conscious and especially of deliberate action.  Will is quite different from defiance.
     Not a defiant part of speech.
     Defy.  Defiant.  Defiance.
     Defy--to challenge the power of; resist boldly or openly; to challenge (a person) to do something deemed impossible.
    Defiant--boldly resistant or challenging.
    Defiance--a challenge to meet in combat or in a contest.
    Most of my life--before knowing how to do otherwise, and long after I was old enough to know better--I have lived in defiance.  I defied expectations of surgeons, "she may never walk or talk," the expectations of educators, "if I were to guess, I would say she might be mentally retarded," and occupational therapists, "here are exercises to help you to learn to use your right hand."
    As my Dad has said, "We didn't if you would learn to talk, but, once you started to talk, we didn't know if you would stop talking."  Though never a stellar student in graded terms, I did graduate from college, then, I completed graduate school.  There need be no apology for my life's story.  Only if I do not share it must I apologize.  Only if I share it will I ever learn.
      Long before graduate school--long before learning to speak--I defied the best-intentioned expectations of occupational therapists.  Carefully planned exercises--customized to my needs--were blown to smithereens.  Honestly, it was so long ago--I do not know if I could know, if I could remember.  How did I perform the assigned tasks with just one, and not two hands.  My intent was not defiant.  My act was.
   Throughout my life, if driven by nothing else, I am driven to excel-lence by, "I don't think you can do that."  "Do you want to make a bet."  Yet, such defiance comes at a heavy price.  I lived an act of defiance.  My body crumbled under its load.
     Far better than any dose of defiance is a measure of will. 
     I do not know the precise content of my acts--of my living.  I do know that I can not live under the destruction defiance delivers to my soul.  
     Make today a declarative act of living, not a defiant part of speech.

Zoomer Chronicles: John Steinbeck

...I discovered that I did not know my own country.  I, an American writer, writing about America, was working from memory, and the memory is at best a faulty, warpy reservoir.  I had not heard the speech of America, smelled the grass and trees and sewage, seen its hills and water, its color and quality of light.  I knew the changes only from books and newspapers....Once I traveled about in an old bakery wagon, double-doored rattler with a mattress on its floor.  I stopped where people stopped or gathered, I listened and looked and felt, and in the process had a picture of my country the accuracy of which was impaired only by my own shortcomings.
     So it was that I determined to look again, to try to rediscover this monster land.  Otherwise, in writing, I could not tell the small diagnostic truths which are the foundation of the larger truth....
     With all this in mind I wrote to the head office of a great corporation which manufactures trucks.  I specified my purpose and my needs.  I wanted a three-quarter-ton pick-up truck, capable of going anywhere under possibly rigorous conditions, and on this truck I wanted a little house built like the cabin of a small  boat.  A trailer is difficult to maneuver on mountain roads, is impossible and often illegal to park, and is subject to many restrictions.  In due time, specifications came through, for a tough, fast, comfortable vehicle, mounting a camper top--a little house with a double bed, a four-burner stove, a heater, refrigerator and lights operating on butane, a chemical toilet, closet space, storage space, windows screened against insects--exactly what I wanted.
                            Travels with Charley:  In Search of America
                            John Steinbeck, pp. 5,6,7.
     My ego is not so inflated as to think that I am riding with John Steinbeck across America.  Yet, the genius of a good writer is that he or she may take you as a passenger--their traveling companion--on their written journey.  I accept his invitation.  He has the room.  I have the time.
    On April 14, 2011, to take liberties with Steinbeck's words, Zoomer, "in due time, specifications came through...exactly what I wanted" was delivered to me.  Frankly, I did not know exactly what I wanted--what was possible to want.  I still don't know precisely what I want--what the life I am to lead is missing.
   As much an optimist as I put myself out to be--as much as I have lived my life as--I did not know whether my body had come to the end of its line.  Had my body closed the line of credit it extended to me to use--to move through my life?
   The intent--the purpose--of my journey with Zoomer is to determine what my physical limits are.  Put another way, how far may I travel.  My mind still works.  Zoomer and I know that that is not enough.  She has not lived through a Minnesota wintertime, but, my stories do not snow her--she finds them chilling.  My goal?  The scope of my pursuits--downtown St. Paul and its environs--is far smaller than Steinbeck's.    
    Wintertime memories cloud my optimism of the distance I may travel.  If I may be so bold--if I may divine--past wintertime's isolation shall remain the past.
    I am not asking that Zoomer and I see America.  I do not seek a four-burner stove, or a refrigerator.  Although heater, and windows screened from insects would be nice.  I can get by with Joy the Joystick, Brainy the Blockhead, and Zoomer.  I can get by with Sally the swing-away arm, Selia the seat recline, Lars the leg tilt, and Ellen the elevate, if I must.
     Zoomer, may we discover our country.  How far may we go?  Where must we not go?  When may we not go?  Night.  On freeways.  When may we go?  During winter?  In snow?  On ice?
    As Zoomer and I embark on a journey to create a new life, I watch a new college graduate take his tentative steps toward a new life--an adult life.  I would not change my place for his--I have gone through the angst that awaits him.  John, may we travel with you to discover our country--to find our way.

Zoomer Chronicles: Global Maps and Positions

     Cartographic scale is deceptive.  Small scale maps minimize potential explorations, yet to be undertaken.  Large scale maps provide perspective necessary to orientation--spatial orientation.
     Zoomer empowers my exploration.  Yet, her power is conditional.  She is not compatible with other powers--any other systems.  Any desire to position myself systematically--globally--beyond the view of Zoomer's position--must be disengaged.
     The medium of old--paper--must guide my explorations.  Yet, all the paper does not determine my explorations.  With faith I begin, while logic and reason I suspend.  Were logic and reason to reign me in, I might never have discovered the Vento Regional Trail...the Ramsey County Medical Examiner...the Alexander Ramsey House...the Science Museum exterior exhibits...the Robert Street Bridge...the Wabasha Street Bridge...Lowertown....
     Logic and reason have not been trashed.  Come snowfall, they will reign me in.  Yet, between now and then, I must take leaps of faith crossing curb cuts, will strong strides crossing streets, and jinx not my adventures with confining precision.
     Zoomer, teach me your ways that we may weather the storms, be steady in snow.  Zoomer, I pray, may we learn how to travel from November to May in fresh air, confined to no inner sanctum.

Zoomer Chronicles: Adventure's Name

     Zoomer v. Invacare, FDX-MCG, Front-Wheel Drive, Center of Gravity.
     Many individuals with scooters, electric wheelchairs, and the like adorn their vehicles with American flags, safety flags, and the like.  I have not motorized the American flag, although I seek the power of protection a bright orange safety flag is promoted as affording me.
     Some people are branded as Jazzy.  I have not been so bestowed.  Were I branded, I would be known as FDX-MCG, or front-wheel drive, center of gravity.  While the balance center of gravity promises, and the power front-wheel drive promises, FDX-MCG or center of gravity is hardly intuitive, much less catchy.
    Wheelchair-bound, or wheelchair-confined is hardly the way I pray that I will proceed through my life.
     If it be so, that is how I will go.  Yet, for now, I vow to take a different road--the less traveled road--toward adventure.
     Adventure--lived fully--must flow from A to Z.  If I am so to travel the road of Adventure, my companion must be Zoomer.
     I hate to be a woman of delusion.  Saying I use an electric wheelchair still stings a bit.  Say it if I must, I will do.  Yet, somehow, Zoomer removes the stinger, and allows me adventure and does bind or confine me to a wheelchair, even if it be mine.  Zoomer is a power-filled princess, while Front-wheel Drive, Center of Gravity is a frightening dictator.
     For now, Zoomer and I shall travel down the road less traveled toward whatever unknown adventure awaits.  We shall travel together, yet, still not alone.  In the spirit of three--Robert Frost, John Hockenberry, and John Steinbeck we shall travel.  Travels with Charley:  In Search of America I must read.