Epilepsy Chronicles: Ignorance. Understanding. Transformation.

     My epilepsy--my brain damage--may not be willed away.  Others may not wish it so, and be so fulfilled.  I may not will it away--whatever amount of strength and stubbornness I will, I may not be so fulfilled.
     "Focus on the positive and ignore negative behavior,"  Mom's words reverberate in my memory yet today.
     Ignorance was never an answer.  Ignorance was never the answer for me.  Ignoring the ignorance of other people will not lead to a positive result.  It never could be.   Adding two negatives to render a positive result may work in arithmetic.  Never was I a star math student--not by a long shot.  But, my life is not an equation--it never was.  It never will be.  I will never will it to be so.
     Other factors were at work.  Other factors are at work.
     Ignorance--ignorance of others--is not a manifestation of malice.  It can't be.  I am not a servant of malice.  I cannot, I will not be.  The only hope of advancing understanding is to be willing to learn--to be committed to look inward...to the knowledge of other people, to the language they speak.
     Malice is not an evil in which I may invest myself.  The return on investment--for me, for God, for others--serves no one.  Evil is not a commodity in which I may invest my resources--my being.
     Ignorance--my ignorance of other's experiences, and motives--is an  indulgence I can ill afford.  To the contrary, ignorance, doubt, questions, and anxiety are--must be--invitations to which I engage my being.  I cannot presume that I have the answers--the answers universal to everyone with seizures, cerebral palsy, or osteoarthritis, for that matter.  Too many variables are involved in the equation to arrive at one simple answer of facts.

Mirrored Outward Image. Egami Drawtuo DerorriM

I cry pains of rejection...

Yet...

When my outward image egami drawtuo

Is mirrored derorrim to me

In the body of another person,

I fear....

I am not the model of acceptance

I so desperately seek in others.

When my outward image egami drawtuo

Is mirrored derorrim to me,

What questions do I need answered

To quell my fear?

When my outward image egami drawtuo

Is mirrored derorrim to me,

How much reassurance must I be given

That I am beyond the pain of that teenager,

Whose Strengthe were hidden from others

By her outer packaging?

The Glass Doll

As the reed of the oboe cries out with music,

My heart yearns

To break the glass doll

Others have chosen to encase me in.

I am a strong being.

My strength is welled up deep within my soul.

I do not trumpet my strength

For the ears of others to hear me.

Such brassy notes are wasted,

When life demands of me an attentive ear.

My attention is focused on this day,

On the task before me at this moment.

My memory

Fortifies my resolve

To ensure my reputation

As a glass doll

Is shattered,

Now and forever.
                           Patty Thorsen, July 1993
                           First piece written reflecting on my disabilities

Epilepsy Chronicles: The Other Face

     Some coworkers feared I might have a seizure on command.  Others feared it happening in their presence.  I understand.  Being out of control of my body in my mind's eye.  I understand.  Yet, not moreso than when I happened upon a seizure of a man awaiting a bus. 
     "Focus on the positive, and ignore negative behavior,"  Mom chants in the deep reaches of my memory.  From my earliest memory, "Focus on the positive, and ignore negative behavior."
     I understood what he needed.  Not medically.  Yet, I knew what help he needed from the many helpless people who surrounded him.  I knew the helpless individuals, who surrounded him, were far from helpless.  While others surrounding me were viewing their first seizure, I was on the other end of the seizure.  I understood what he needed.
     I had never met the seizing man before witnessing his seizure.  I have not seen him since that day.
    Yet, I was given a voice--words to speak---for a reason.  I am not committed to vengeance against other individuals.  Yet, I can and must commit myself to positive vengeance against the excessive electrical energy in my brain, the root of my disabilities.  I can and must be the human irritant--the nacre--that contributes to pearls of understanding.  

Epilepsy Chronicles: The Morning After

...
     Slowly...ever so slowly....I awaken from a deep sleep.  I awaken.  I have slept off my throbbing headache.  Or so I think.  Is my epileptic hangover over?
     Can I be so bold as to hold out that hope?
     Slowly, I question....
     Was that just a bad dream--a nightmare--or did I have a seizure last night?
     My headache is gone.  Will I have another seizure?
     My knees feel wobbly.  The firmness of my step tentative.  Will I have another seizure?  Honestly, I don't know.  But, I can't admit that, at least not to everyone.   
     What can I do?  What should I do?  What action will give me what I need--what we need, to move us forward from doubt, uncertainty, and fear?  God, I don't think I am being selfish.  But, what can I do?  What should I do?
     I can't add to the doubts, and anxiety of my coworkers as to whether I will have another seizure.  God knows, some people are convinced that I can have a seizure on command, without my feeding into their fears.
    I need their confidence in me.  So, what do I do?  How do I garner that confidence--that positive energy?

Epilepsy Chronicles: In the Throes...

     I fear the worst.  My body is out of control.
     Relieve me of my consciousness.  At this moment, relieve me of my consciousness.  Help me.  God, help me. Help me to hang on.
     My right arm and leg are falling off my body.
     God, help me. ... Mom, help me.  I need you.  Mom, help me.
     Home alone, I cry as though Mom can hear me from the next room.
     Mom, help me.  I need you.
     "You will learn to live independently," she said.  "You will learn to live independently."
      My roommate is gone.  I need you.  How dare you leave me in my time of need!  How dare you leave me in my time of need.
     I am alone.  Someone has been here, always someone has been here--within earshot of my cries.  However embarrassed, or shame filled I have been that I have not taken my medicatiion, someone has been within earshot. 
     I am alone.
     Maybe if I turn on my right side, my arm and leg will stop shaking.  Maybe, they won't fall off my body.  What else can I do?
     Relieve me of my consciousness.  Let me sleep.  My head is throbbing.  Let me sleep off my throbbing headache.  My head is throbbing.   
     Finally, without my knowing, sleep is given to me.  My consciousness relieved.

A Huge Difference Between Understanding and Acceptance

    "Your cerebral palsy accelerates your aging process.  Do you understand?"
....
     I was in a fog.  Sitting in an opulent hotel suite celebrating a family wedding, I was in a fog.  It never occurred to me that I could do anything but push my body as hard as I had been doing.
     Delusions of having some modicum of smarts were shattered.  The notion of there being alternatives to pushing my body beyond her limits destroyed.
     Long-term disability? SSDI?
     I knew the intellectual meaning of both.  Or so I thought.
     Long-term disability...LTD to some....
Long-term disability insurance would allow me to retain a significant percentage of my income should I become unable to work due to a disability.  Long-term disability insurance was offered for a pittance.  Quietly, I purchased the policy.  Saying little to many, it seemed remote, yet, more likely for me than others, that my disabilities might be amplified--they might deafen my cries to work.
     I could not conceive what it might be--how it might look--that I would be unable to work.  After all, I was stronger--I was more stubborn--than any obstacle my cerebral palsy and epilepsy might put before me.  Or so I thought.    I closed my eyes, and opted to buy the insurance.  It offered peace of mind.
     I thought I had looked at all of the angles of how my disabilities might affect my future.  I forgot.
     My capacity to look at all of the angles, literally, was obstructed.  I forgot.  I forget.
     My right eye wanders.  You could say, I don't focus on the fact that I have little to no peripheral vision out of my right eye. Never have I had it.  My world view has been left of center.
     SSDI?  Social Security Disability Income.
     SSDI was beyond me--completely beyond me.  I knew the words, "Social Security Disability Income." Yet, SSDI was something other people were on--something other people received.
     I was in a fog.
     "Your cerebral palsy accelerates your aging process.  Do you understand?"
     "Yes, I understand.  But, there is a huge difference between understanding it, and accepting it."
     I was in a fog.  For the moment, I was sinking into a comfortable sofa, I was enveloped by loving family.
     I was numb.  My family stunned silent.  Together we sat, trying to absorb a future radically different from what we imagined--a future different for all of us as a family.
      "Your cerebral palsy accelerates your aging process.  Do you understand?"
     "Yes, I understand.  But, there is a huge difference between understanding it, and accepting it."

I am Praying for You

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

Hope...Understanding...

My child seeks hope.
My child seeks understanding.

For a lifetime,
I have sought hope
Hope of understanding
Understanding much.

My child sought understanding.
What is cerebral palsy?
What is epilepsy?
My child sought understanding.

My child sought understanding.
How do I stop the teasing?
If you give me just the right words,
I know I can stop the teasing.
My child sought hope.

My child seeks understanding.
What can I say?
What can I do?
Give me the magic words.
My child seeks hope.

My child seeks understanding.
This was given for some reason.

Don't tell me to ignore this.
Don't tell me I must ignore a part of myself.
Don't tell me to sacrifice myself.
Is that really the secret to understanding?
I do not understand.


Is the price of your love
That other people must be wrong?
Is the cost of my love that other people are wrong?  


This day, may we love  freely.
In our diversity, may we all be worthy.

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

Epilepsy Chronicles: How Long Did It Last?

"How long did the seizure last?"

     You know I live alone!  Let's see...I should be able to figure that out.  After all, I wasn't doing anything.  Oh, that's right, I forgot.  I know that I am lucky, because I usually get an aura--a feeling like you get when coming inside on a sunny day.  So, I knew to look at the clock before the seizure started.  Once the seizure stopped, I looked at the clock again.  Based on that the seizure lasted....Get real...my attention was hardly directed toward how long the seizure lasted.

    I do know it is important information to him.  I know that my neurologist can diagnose a seizure, in part, by its duration.

    How do I tell you that there is more to my seizure than its length?  How can I convey to you--you know--I live alone.  I am capable of doing so.  Yet, I am a bit preoccupied during a seizure.  But, how on earth do I tell YOU that.  You are a skilled neurologist, but, your people skills leave a lot to be desired.

     In the future, I will do everything I can to check the clock before and after the seizure.  After all, I don't want to disappoint you.

     There has to be another way to determine how long a seizure lasts.  After all, not everyone with seizures can live with someone or be with someone every moment of a day and night.  It just isn't practical!  

     What are people thinking?  Or ARE people thinking?  And people say that I am not very responsive.

The doctors tell me that my thought process is messed up after a seizure.  But, what about their thought processes? What excuses do they have for  being messed up in their thought processes.

    "How long did the seizure last?"

     Do you have any idea of how ridiculous your question sounds?  Have you ever had a seizure before?  Are you aware of the time warp I experience during a seizure?  ...Seconds last for minutes....minutes seem like hours...

    "How long did the seizure last?"