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.

Stolen Dignity

     WHY ARE THE KIDS TEASING ME?

     This is a question first asked in first grade.  The question remains with me today, not as a fixation on long-forgotten people, tangible pain, or specific places.  No,  the sting of “Why are the kids teasing me?” and specific words, phrases, or actions was removed many years ago by writing about the question, and the insights the question has given me.

     The factual basis of the question was my bent right arm, and wrist, and limping right leg.  My early understanding of the question was centered on the facts.  Yet, although I sought concrete facts from family, dissatisfaction with the answers given to me led me through a journey that I understood only in its necessity.

     My dissatisfaction was not my expression of doubt—doubt of love my family had for me.  I had, nor do I have any doubt.  They loved, and love me.  My dissatisfaction was threefold.   First, the logic of ignoring the teasing.  Second, saying that something was wrong with the bullies was no better than my feeling that something was wrong with me.  No one profited from that approach.  Finally, the cowardice of school administrators not to address specific names involving teasing that I reported is unconscionable to this day.

     “Why are the kids teasing me” was a question that offered me a nascent understanding of “stolen dignity.” 

      The understanding, response, and inaction regarding teasing was my invitation into a lifelong journey.

     “Stolen dignity” is not a word that appears in the Oxford Dictionary, http://oxforddictionaries.com/ .  It is a word that takes a lifetime to understand.  Yet, pursuit of its meaning is worthy of our earnest endeavors.

Comprehending “stolen dignity” must begin with “dignity.”  The Oxford Dictionary defines “dignity” http://oxforddictionaries.com/ as, the state or quality of being worthy of honour or respect:  the dignity of labour;  [count noun] a high rank or position:  he promised dignities to the nobles in return for his rival's murder.  2 a composed or serious manner or style:  he bowed with great dignity.  A sense of pride in oneself; self-respect:  it was beneath his dignity to shout.

     “Stolen” is defined by the Oxford Dictionary http://oxforddictionaries.com/  as an adjective.  The dictionary’s definition speaks of ideas, rather than people, although I think it is plausible to insert “individuals” in the place of “ideas.”  Oxford defined “stolen” as dishonestly pass off (another person‘s ideas) as one’s own.http://oxforddictionaries.com/.

     Dignity is not a human quality that is earned, nor is it possible without life experience.  Dignity is a gift.  Stolen dignity is an experience, which is not earned.   Similarly, it is not possible without life experience.  Yet, while dignity is a lifelong process, stolen dignity may be given in an instant—in a moment shorter than is possible to measure by any mechanism.

     Stolen dignity is not a condition that is outgrown.  Stolen dignity may be inflicted with a piercing knife any time from birth until death do us part.

     Stolen dignity is not an irreversible sentence.  Fervor is the requisite spirit, which must energize all efforts to extinguish the root causes of stolen dignity.  Fervor underlies ever word I write.