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.

Information

     What information do governments share?  To natives, to world citizens?  Do we listen?  Or, do we presume that government information is suspect, by virtue of its connection to political bodies?
     The less coverage given by our own media, the more important it is that we know what information sources are available to natives of a foreign country.
     I am fascinated by the many sources of information.  Discerning the veracity of that information intrigues me.       
     I was raised in a democracy.  Within that democracy, my family, friends, and culture instilled in me the belief that there are channels of government--channels within the community--to address problems.  I witnessed civil service close to home.
     Cynicism about government is not a part of my composition.  Any cynicism I might have is channeled into my votes for candidates with more positive--more constructive organizations.  Any endorsements I give to voting against a candidate, rather than for a candidate with a different view only serve to delay resolution of the problems at hand.  Time is precious.  We may ill afford such delays.  That is not to say that decisions should be made hastily.  Quite to the contrary.  Decisions need to be made with due deliberation.

A Mermaid's Tone

     Muscle tone.  Not of a body builder.  Muscle tone.  A Mermaid's Tone.
     I hope for it.  I will it to be.  I pray with fervor that it be--all mine.  Yet, hope, will, and prayer are not God's promise to me.  Yet, I must hope.  I must will it.  I must pray.
     Arms arise skyward.  Into the pool's water they plunge.  Alternating.  One, then the other, as oars in a river's current.  From my shoulders, this mermaid's oars are anchored.
     Arms outstretched.  Wrists pulled together.  With the force of a magnet, their cymbals clash.  With a strong will, her wrists resist the temptation of a lifelong embrace.  The force of her forearms cry out.
     "Strengthen me.  Use me.  Believe in me.  Do not waste my muscles.  Use me.  Do not will my muscles to be withering, dying willows.  Use me.  Teach me to reach outward--to branch out-- to blossom  in full glory."  
     The Mermaid's biceps believe.  Though not her eyes, the Mermaid's biceps believe in the vision--A Muscle's Tone.  With their tissues, the biceps connect the oars to the force of the forearms.
     The Mermaid's calves circle on the water's unicycle.  On her back, she floats.  The Mermaid's ankles pedal.  Her feet flutter.  The Mermaid's thighs push toward a toned spirit.  Not atrophy.  The Mermaid paddles toward a Muscle's Tone.
     I seek not the strength of the Bodybuilder.  I am the Mermaid.  I seek the strength of a Muscle's Tone.  No boorish bravado do I seek.  I seek a softer strength.  Not submissive.  Not boastful.
     I am a Mermaid.  I seek a Mermaid's Tone.

Stop Bullying: Speak Up Pledge

We all have the power to stop bullying by getting involved and performing simple actions that can make a difference in others' lives.  Together we can create a community that is committed to ending bullying.  So join me in taking the pledge to Stop Bullying:  Speak Up today.
                          Stop Bullying:  Speak Up pledge
                          http://www.facebook.com/stopbullyingspeakup
     I urge you to take the Stop Bullying:  Speak Up pledge today.
Whether it be with children, teens, adults--whatever the age--our words matter.  It does NOT matter whether  or not we know the individuals.  EVERYONE deserves basic, human respect.  Suicides have resulted, and self-respect damaged over feelings regarding sexual orientation, disabilities, and appearance, to name a few, that have been used as justifications for bullying.  Please take this pledge.
     Expedite necessary action. First, press http://www.facebook.com/stopbullyingspeakup.  Second, press the Take the Pledge icon.  Third, add your name.  Fourth, press the Like button.  Identify yourself as a teen or an adult.  Share the Stop Bullying:  Speak Up pledge with your friends.
     Further action may be taken, if you so choose.  First, you may add a Comment to your Pledge Signature.  You may join groups of others concerned.  Other options are offered on the Stop Bullying:  Speak Up  Facebook page.
     Most powerful are the words you speak--the words you tolerate.   Actions you take--actions you tolerate matter as well.

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.

Epilepsy Chronicles: Humor

     Humorous?  Yes.  Humorous.
     There are many serious aspects to having epilepsy--to having seizures.  It is not a joke.
     Yet, there have been precious moments--precious in their absurdity.  Neurologists have an amazing sense of humor.  They call it bedside manner.
     The same neurologist, who told public television viewers this week that people with epilepsy foam at the mouth, once asked me, "how long did the seizure last."
      I went into the neurologist following the seizure to have my blood levels checked.  Did my medication levels need  to be increased or decreased, so as to prevent future seizures?  I understood the reason behind his question.  He had known me for some time.  He knew I lived alone.  Knowing that, he still asked, "How long did the seizure last?"
     A part of me was tempted to say, "Well, let's see, I looked at the clock and it said 6:40am, and I started seizing.  I looked at the clock at 6:42am, and I stopped seizing.  Gees.  I guess I should have looked.  After all, I was just lying on the floor.  I wasn't doing anything at the time."
     Come on, give me a break.  I had a few more pressing things on my mind at the time.
     "Get down to the ground.  Get away from things I could grasp onto." I chanted to myself.
     Equally humorous to the neurologist's question is my subsequent behavior.  Since that time, I make sure to look at the clock when I feel a seizure coming on, and once again when the seizure stops.  If I am lucky, my exhausted brain, and my memory will not be so impaired as to prevent me from remembering the length of the seizure.  I try to be a compliant patient:)   Sometimes, I go overboard:)
     But, far more humorous than that incident happened several years later.  I was in a neurologist's waiting room.  A different neurologist.  I was awaiting an appointment with him.  Suddenly, I started to have a seizure.  Fellow patients knew precisely what to do, and went into action calmly.  The neurologist was called.  He came out to the waiting room.
     "Are you OK?" he asked.
     "Am I OK?  Sure, I always wanted to come to your office and have a seizure!  Am I OK?  Have you ever seen a seizure before? Am I  OK!" I thought.
    In my 40+ years of experience with seizures, that remains my favorite seizure experience.

Epilepsy Chronicles: Misinformed

     Deeply disturbing information was disseminated, and stereotypes were reinforced last night during a television interview.  On September 10,2011, University of Minnesota football coach--Brad Kill--had a seizure during a football game.  His players, and colleagues knew of his seizures.  I have not met Coach Kill.  I report regarding what I understand of him.  Media coverage.
     I do understand what it is to have a seizure.  I have had seizures since childhood.  I am 51.  Each individual's seizures are different.  Yet, I am compelled to respond to the misinformation given, and stereotypes reinforced by a neurologist last night.
     Most disturbing of what the neurologist said?  Something to  the effect of, "People with epilepsy foam at the mouth."
     This is not true.  Case closed. 
     "Seizures are frightening."
      Yes.  Both for the observer, and for the person having the seizure.
      However, fright is not an excuse to stand by--panic.  You can help. 
      First, it is possible that an individual having a seizure may be able to hear what is being said during a seizure.    Often, I am.  Yet, the excessive electrical activity in the brain--the anatomical thunderstorm--drains me of the energy that otherwise I would use to respond.
     Second, not holding an individual during a seizure may be too extreme of a directive.  Beyond getting the medical attention I need, the most helpful--reassuring--action ever taken was from a colleague.  While my right leg was convulsing--shaking violently--she caressed my leg.  She told me I had done nothing wrong, I had no reason to feel embarrassed, and I would be OK.
     She caressed my leg.
     My colleague trusted what I had said--valued what preferences I had expressed to her regarding my seizures--such that she resisted the nurse who said not to hold my leg.  She was not restraining me from movement.  She was touching me firmly--reassuringly.  There is a huge difference.  Never have I heard a medical professional make that distinction.  There is a difference--a huge difference.
     As to embarrassment--being embarrassed by having a seizure--I understand.
     Yet, far more embarrassing than any seizure could be ever is not telling someone how you prefer to have your seizures handled, if you have seizures.
    Early in my career, my loved ones were concerned about I would say during an interview that I had seizures.  I understand.  I appreciate their advice.  Fear existed, and exists yet today.  I assure you, I did not walk into job interviews and say, "Hi, I am Patty Thorsen.  I have seizures.  Can I have a job?"
    I did inform my supervisors, and colleagues that I had seizures.  I gave them the basic emergency contact information.  I took one more important action.  I informed my supervisors, and friends how I preferred to have my seizures handled.  Embarrassment, or fear I felt in doing so was mitigated by the knowledge that they would know how to handle my seizures.
    Embarrassed by having a seizure?  Yes and no.  Yes, the times I have had a seizure in public are not my proudest moments.  Yet, once I have a seizure, I need to channel every ounce of energy I have, and every ounce that I don't have toward staying as calm as possible during the seizure--praying that the words I spoke about my seizures were heard.  During a seizure, I pray that people around me--people who have the energy to take constructive action--are courageous enough to do so.
    Whatever embarrassment we well may feel, we--any of us who have seizures--need to channel that embarrassment into helping other people to help us.  We need to make an investment in creating calm understanding--not fearful chaos.
    Friends and family may offer their loving questions as to how someone with seizures how they wish to have them handled.  Whether it be a reassuring word or touch, humor or whatever.  Honesty is the only way to dispel awkwardness, fear, and chaos.
    I have serious doubts about some medical professionals I have known, and with whom I have had interactions.  I have had, and continue to have the benefit of extremely helpful, competent medical professionals.
     Yet, the comments made by the neurologist this week made necessary my response.