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: At War

     Zoomer is NOT happy.  Her children, if that is who they are, are at war.
   "Brainy the Blockhead started it all!" Joy proclaimed.
   "I had nothing to do with it.  Someone bumped me.  Someone hit me so hard that I landed underneath Lily Ann the Left Armrest,"  Brainy retorted.
    "Likely story.  Own up to what you did.  You elevated Lily in midair without my permission--without any warning," Joy the Joystick argued.  "You left us hanging in midair--you scared us."
     Zoomer came home so that her children could nap--be recharged.  Later, Zoomer pleaded with me to let her out.  She reminded me that she could take me where I needed to go--desperately needed to go.  So, I relented.  I warned Zoomer, and Joy the Joystick, that however we felt, we needed to beware such that Brainy would once again elevate us to peaks we had no interest in ascending.
     We completed my appointed task--almost.  The morning's frustration and fear called for one simple antidote--Breyer's Vanilla Ice Cream.  So it was to be.
    With a cold  container awaiting my spoon now in my grubby little hands, I ventured forth boldly.  The next appointed task?  A tool kit.  Brainy has a questionable amount upstairs, but with a metal screw loose, and another screw missing, it was all but a matter of time before I befell another of Brainy the Blockhead's pranks.
     Walgreens.  Honestly, my attention has been so focused on being outside, and honing my skills on outside destinations, that I had forgotten when my last time in Walgreens might have been.  The Internet has been--is an intimate of mine--a bridge from wintertime isolation to indulgence in the outdoor world.  It is not hard.  All that is required is creativity, and a strong will, not to mention a strong will not.
     But, I digress.  With glee, we--Zoomer, Joy the Joystick, Brainy the Blockhead, and I--entered the accessible door of Walgreens.  We were joined by our timid friend--Randy Andy the Right Armrest.  Timid?  Randy, timid? Yes, you see, Randy Andy suffered a broken wrist--his foam rubber split right in half--at the hands of Zoomer, who was navigating an elevated state.  After a fuschia pink tape did not offer the healing he needed, Randy Andy was subjected to surgery to re

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: Personae

     Only within the past three months has the notion of persona been an option worthy of my consideration--my adult consideration.  I have not fully embraced the notion, yet, I am considering its value to me.
     Zoomer is a vital persona to transport me to a better way of living--a vehicle from immobilized isolation to mobilized companionship.  Without Invacare FDX-MCG, I lived in a paralyzing isolation that I want no part of reliving.  Invacare FDX-MCG was powered by batteries, yet, only Zoomer empowers me to go beyond immobilized isolation.
     I have lived with other personae in my younger days.  All personae were chosen by me--by family and friends--to expand my shy, introverted, insecure self.
    Patrushka was my first indication of my father's love of the Russian world.  He could not transport his family--his life--to Russia [he tried:)], but, he could bring the Russian world to his family--to his life.
    Patty Tricia was my sister's endearment.  It was playful.  I don't remember much more of it.
    Pat.  The only person with...not with permission, but with the proper association...to address me so was Mr. Merry.  He came into my life at two very different, yet two very different periods of my life.  Ray and Mary Merry were the loving parents of my childhood friend, Jeannie Merry.  Jeannie and I were quite a pair. She had the full use of both hands.  I could walk.  Jeannie had osteogenesis imperfecta.  We were friends in the early 1960s.  We went to kindergarten together, I believe.  Due to her osteogenesis imperfecta, it was for her parents to transport her within their split level home.  Yet, Ray Merry did not cast a dark shadow over Jeannie's life.  She was a joyful person.  I have lost touch with her.  The last I knew she was a student at Arizona State University, who was majoring in nutrition.  Is she still alive?  Did her osteogenesis imperfecta accelerate her aging process?  Is she still alive?  Honestly, I do not know.  My mastery of research does not render answers.  But, I digress.  Ray Merry--or Mr. Merry as any child would address an adult--was playful in spirit with me.  We lost touch.  Then, in high school, one of the assistant principals was none other than Mr. Merry.  I had not achieved the age that would enable me to address him by his given name.
     Bubbles.  Yes, Bubbles.  What else do you call a classmate--a choir partner--who laughed so hard that she starts snorting?  I had remembered the name, but, it was not until a recent visit from Woody or Woodstock that I was reminded of my snorting, bubbly persona.  Bubbles was the alter ego to the teenager struggling to be accepted for who she was.  I was not alone.  I sang, I laughed with Woodstock, and Jungle Bunny, and then, oh, we can't forget Grunt or Gruntly.  I have no idea how he got that name.  Grunt or Gruntly hardly personified the friendly, unconditionally loving classmate.  Everybody liked Gruntly.  Teachers, classmates, cliques.  Gruntly exceeded the confines of any cliques.  Gruntly was judgmental of no one.
    Ms. P.T.  A teenager coming of age during the emergence of Gloria Steinem--of Ms. magazine--found someone who was advocating a more liberated identity that accepted the potential of underestimated individuals--women.  A high school home ec project required the construction of some project.  Together with my dad, we created wooden bookends with the cork letters Ms. on one bookend and P.T. on the other bookend.  I have those bookends yet today.  I am still seeking liberation--fulfillment of a life I don't understand.
    Perfect Patty Thorsen.  Having joined the library staff, some had trouble remembering my previous department, as though that really mattered.  It seemed so at the time.  PPT--Product Performance Testing--was quickly translated to Perfect Patty Thorsen.  Amid struggles to meet up to department--company--production standards, Perfect Patty Thorsen has survived in friendship with a work partner in crime.
    Roboaunt?  Yes, Roboaunt.  The nervous introduction of Zoomer to my nephew was embraced fully.  Thus, among my personae is Roboaunt.  The name, in and of itself, is not my favorite.  Yet, that my nephew so called me--has so embraced me--Roboaunt is a persona I welcome.  
   I relinquished Pat long ago to describe me.  Patrushka is used no more.  Yet, hearing her once more brings Russia back to life in me.  Patty Tricia brings to life a loyal sister, who took the abuse of  a frustrated, bratty little sister.  Patty Tricia's sister is the best sistah any person could ever wish to be given.  Bubbles. Long ago, she went flat.  Roboaunt has to grow on me.  Time  with Zoomer--time with my nephew--may change that.  Bubbles has adult connotations that do not befit me.  Yet, the fun spirit of Bubbles is there somewhere, maybe???  I don't know.  Perfect Patty Thorsen is fun.  Maybe Perfect Patty is Bubbles' adult persona.
    I want to embrace my personae as they befit me.  Yet, I do not want to embrace any of my personae, however endearing they may be to me, at the price of assassinating the true character I was given at birth to live til death do us part.

The Good Short Life

     Dudley Clendinen, a former New York Times national correspondent and editorial writer, chronicled his experience with amyotrophic lateral sclerosis.  Many call it ALS. Others Lou Gehrig's disease, in honor of a New York Yankee who died of the disease in 1938.
     Dudley offers a first-person perspective of Lou, as he calls it.  Reading his chronicle, it is clear, the it is really he.  Dudley's intimacy with Lou is worthy of our embrace.
    Some are choked up to read of the final curtain call, which befalls the individuals intimate with him.  Three people come to mind, known to me, who live with or have died at Lou's hands.  I would lie to exclude myself from being choked up about Lou.
     Yet, reading Dudley's commentary in today's New York Times calls me to reflect.  I am aware of life's realities.  Dudley says, "I sometimes call it Lou, in its honor, and because the familiar feels less threatening."  I understand.  Whether it be confronting a condition personally, or facing the condition in relations with other human beings, familiarity with--intimacy with--the condition is vital.
     I have lived with cerebral palsy since my first breath.  I have known no other intimate companion.  Epilepsy seizes me at times, when I abstain from my anticonvulsants' commands for me to take.  Yet, when I awaken from the seizing moments of my life, I am left to humor my cerebral palsy.  I must not abbreviate her presence in my life by calling her CP as a means of escaping the realities she presents to me daily.  I respect the abbreviation of--the calling of--her as CP by her other intimates.
   Yet,  I am challenged enough to maintain my own balance, without taking on responsibility of another individual, however similarly conditioned they may be.  Two years ago, chemical imbalances seized my clarity of thought.  While navigating my life through the clouds, I was informed of a stunning reality.  Cerebral palsy accelerates the aging process.
    My lifelong understanding was that cerebral palsy was not a degenerative condition.  Yet, accelerates the aging process was not synonymous with degenerative condition.  I confess, I am not faced with the prospect of being choked by my cerebral palsy.  Yet,  I do endeavor to understand the distinction between accelerate and degenerative.  
     Accelerate is derived from  accelerare "to hasten, to quicken," from ad- "to"  + celerare"hasten," from celer "swift."  Whereas, degenerative is derived from de + genus (gen. generis) "birth, descent."  Figurative sense of "to fall off, decline."
     During the nine days when my anticonvulsant imbalances were addressed, my understanding of degenerative in its figurative sense was accelerated at lightning speed.  As contrary as it may seem, striving to compete with the speed of others differently conditioned than I was no longer the point of my life.  It couldn't be.  The price to do so would have been too great--it would have driven me to my immediate demise.  If I strive to exceed the boundaries of who I am meant to be--who I will myself to co-operate with God to be--then I am avoiding what is available for me to live.
   As I say this, I recognize that this is far easier said than done.  I have yet to accomplish living what is within my boundaries to live.  For this reason, and to achieve this goal, I must return to two people's wisdom.  Let me be clear, I am not speaking of imminent death for myself, that is not my point.
    ...we don't talk about how to die.  We act as if facing death weren't one of life's greatest, most absorbing thrills and challenges.  Believe me, it is.  This is not dull.  But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative--not governing--to be free. 
     And that's the point.  This is not about one particular disease or even about Death.  It's about Life, when you know there's not much left.  That is the weird blessing of Lou.  There is no escape, and nothing much to do.   It's liberating.
     Reading Dudley's commentary, I am transported back to the words of my maternal grandfather--a mentor to me.  He lived with us during the last few years of his life.  While still quite lucid, he spoke words that guide my living yet today.
   "When I die, don't be sad.  I have made amends with everyone I have had differences with."
    Returning to Dudley Clendinen, "the familiar seems less threatening," is essential to how I must live--to how I may thrive.  On April 14, 2011, I took ownership of an Invacare FDX-MCG power wheelchair.  Yet, that was not the first step toward my liberating mobility.  Familiarity.  Less threatening.  These two qualities were essential to moving forward in my life.  Thus, Zoomer was born.  Zoomer moves me closer to other people, and other people closer to me.  Mechanical parts take a back seat to the persona of a more active way of living--not faster than other people, rather, different from others.
    I pray to be defined--guided--by blessing, making amends, familiar and less threatening.  May we be attuned to--listen to--the sages in our lives--in our world.

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.

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.

Zoomer Chronicles: Detour's De Tour

     How many ways do you travel to and from home--from Point A to Point B?  One?  Why?  Have you ever been forced to travel from Point A to Point B using a different route?  Why?  Traffic.  Rush hour.  An accident. Construction.  Weather.  Personal commitments.  Professional commitments.  Money.  The environment.
     I intend no judgment. I ask nothing more than, "Why?"
     Have you ever chosen to take a different route to and from home--from Point A to Point B?
    Two months ago, when Zoomer and I met, I established a priority for our travels.  I needed to identify as many different routes to the same destination--to and from our home.  Minnesota summer's sabbatical from winter's wrath is short.  Wintertime indoor sanity essential.
     I have chosen to travel from Point A to Point B using different route--different routes.  Why?  Winter's wrath. My sanity.  Experience--two winters of homebound living.
     So, I ask.  Why do you travel as you do?  What do you know of your backyard--of your neighborhood? What do you see in your backyard--around your neighborhood?
    Construction.  Light-rail transit.  Preparation for progress.  These do, and will define my routes.  Today, quite intentionally, we rode from home to the grocery store.  My intent was to be without a roadmap--with only my eyes, ears, nose, and memory to guide me on my way home.
    Downtown St. Paul, Minnesota is small by many urban standards--eleven blocks north to south, and eleven blocks from west to east.  Yet, within the small area a large sense of adventure breathes.  The simple naming of streets is an adventure of the imagination.  How is it possible for 5th Street West, 6th Street West, and Seventh Street West to intersect?
    OK, so the construction of the XCel Center is the logical explanation.  Yet, that is a drunken Irishman's logic, in my book!  I confess to Minnesotans, I am neither a cradle Catholic, nor a native St. Paulite.  Forgive me, Father, for I have sinned.  I was a closet Universalist, and a native Minneapolitan--Golden Valley girl, born of Norwegians, and Englishmen--truth be told.
   But, I digress.  I do believe that 28 years living in St. Paul bestows on me the right to speak for her downtown--speak of her character.  St. Paul, Minnesota infuses in Zoomer and me her spirit of adventure.  New to her are brightly-colored pianos randomly placed inviting all to sit down and play a few bars.  Engraved sidewalks, markers, and buildings long to be quoted.
    How many ways do you travel from Point A to Point B?

Zoomer Chronicles: An Anniversary

     On April 14, 2011, my life changed dramatically.  One year of denial and resistance to my needs.  One year  of fear, "People are going to be condescending toward me."  Finally, my resistance gave way in the face of debilitating ankle weakness--complete lack of stamina.
     Two months ago, that changed.  Invacare FDX-MCG is hardly captivating, or intuitive.  Yes, FDX means "front-wheel drive," and "MCG" means "center of gravity."   Front-wheel drive gives me the traction I need to navigate in wet conditions, although we should not be out in heavy rain.
     Zoomer has transformed my electric wheelchair fears into personal liberation.  
     Never have I been an outdoors person.  I am not athletic.  Childhood neighbors' GREAT DANES instilled in me paralyzing fears of animals.  They were far taller than I was.  I wanted no part of being trampled by these GIANTS.  So, little has tantalized any outdoor desires I might have had.
     Then....then, an interminably long Minnesota winter, the magnitude of snow not seen since the late 1960s, germinated in me not just a desire, but a yearning to be outside--to stay outside--to live beyond health's necessary confines dictated by a weak ankle.  Opportunity presented itself from an unlikely place to open the doors--exceed the confines of my necessary confines--an insurance company advocate knowledgeable of available vehicles of freedom.  She guided me through the winding roads of the adoption process.  Truly amazing.
     Fast forward to April 14, 2011.  Four months of labor gave birth to Invacare FDX-MCG--Zoomer.
     Never a mother, never a driver, this large infant--an elephant in my room--was frightening.  Unbelievable to many, my long confinement extinguished knowledge of where do I want to go?  Fundamental survival instincts were beyond my comprehension.
     Door jambs, narrow hallways, doors, handicap-accessible doors, and elevators were among the infant steps to be taken at a snail's pace on level 2 of the four levels of the wheelchair available to me.  Interminable--painful--sounds of Zoomer's dancing wheels did not help my confidence.  Yet, that yearning for freedom overrode my fears.  Slowly, the knowledge that the nicks never dented my body--never injured anyone else--or Zoomer's seemingly indestructible body accelerated my confidence.
     I have never been a risk taker, or so I think.  I have been fiesty--one who tried to push the envelope of others' expectations--yet, never a risk taker.  I have never been a risk taker--never a gambler.  Yet, now placed on the table before me is a necessary risk--a gamble I must take.  I am not a person of stupid risks.  Though poor in math, I am a calculating person.  Before I knew to count, I was naturally calculating in my breaths.
     I cannot live within the confines of my home's safe cocoon.  I must open the door.  I must lap up the pool's buoyant waters.  I must strengthen my legs.  I must kick the arthritis from my ankle's innards.  Zoomer is the vehicle to drive me toward my goals--to fulfill my needs, to satisfy my desires.
     Yet, Zoomer, "What are your capabilities--your capacities?  What are your limits?  Rain?  How much?  How heavy?  Snow?  What depth?  How far may I travel by the power of Baron's battery?  Watt must I do?  Am I speaking the language native to your understanding?  TELL me.  Do tell me.  I  MUST know.
      These are the this anniversary's answers I seek.  Yet, I know you may not choose to wrap up these answers and present them to me today.  This is my wish list.  Should you wish to present me with answers in a future anniversary's gift,  I would not complain.
     For now, engage me--present me with engagement in today's life.

Safe Communication--Communicating Safety

     Today, communicating personal safety via a safe vehicle came to my consciousness.  How?  By what vehicles?
     Several factors motivate my desire to communicate personal safety.  A lifelong history of seizures.  Being single.  A desire to leave "breadcrumbs" as to my general whereabouts--my general well-being.
     Voicemail.  Audible breadcrumbs are the humorous voicemail messages that I leave conveying my whereabouts.
     Facebook?  I have been very slow to understand how I want to use Facebook in my life.  No technology is inherently evil, as is sometimes implied.  That is a copout.  It is the use of the technology, or application that determines the value of the application.
    Facebook.  I was introduced by a younger relative, someone in his 20s.  I am 51.  I was motivated to learn about Facebook as a means of communicating better with my relative.  So, I observed on the sidelines.  I was reticent to engage in the technological party line of the 21st century.
    Voicemail.  Facebook.  Breadcrumbs.  I have changed.  My understanding of human interaction has changed dramatically since 2009.  I was familiar with communicating in the workplace..with my family...with my friends...with my faith community...Zoomer.
    My e-mail system was unavailable temporarily tonight.  Twenty years ago that would have been inconceivable.  Funny how just a few years can make some vehicle of communication indispensable.  Loss of Internet access is worse yet.  Funny.  Yet, true.
Yes, in moderation, Facebook.  I am aware of my generational distinction with my younger relatives in relation to Facebook.
    In 2009 and 2010, the Internet, and e-mail became a critical connection to the outside world.  Now, Zoomer has mitigated some of the isolation that made the Internet, and e-mail such a vital connection in my life.  Now, as Zoomer and I explore our environs, and get to know one another, sharing that story electronically has expanded my understanding fundamentally.
    How we live--how we feel about our lives--is a choice.  Giving up on our lives is inexcusable.  Feigning weakness is nothing more than an unwillingness to make a positive commitment to our lives.  Facebook, and, I guess blogs are different ways to explore--to share--that commitment.
    In the workplace, trying to navigate challenges, my default behavior was to exude optimism, in hopes of generating it in other people.  I continue in that mode today.  It is selfish.  Optimism returned is a source of enormous strength.
   I try to use voicemail, email, and Facebook for two purposes--communicate my own safety, and share
my convictions regarding optimism via my experiences with Zoomer.  Truth be told, I don't know where Zoomer and I are headed.  No, I have a street atlas.  It is summer in Minnesota, or so they say.  Winter in Minnesota lasts forever.  Summer is a fleeting moment in time.  Winter, snow, and ice will come.  How far will Zoomer and I be able to travel?  Regardless of weather, how far may Zoomer and I travel?  Both questions--the fears regarding answers to those questions are in the back of my mind.  Yet, I must focus on today--on today's adventures--to mitigate my fears.  I must choose to commit myself to today's adventures.  If I choose not to commit myself, then, I have no one to blame, but myself, for being unfulfilled.