In Control?

     Recent tweaking of my anti-tremor medication brings one word to mind--control.  Control?  Yes, control.
     Oxford Dictionaries defines "control" as "[mass noun] the power to influence or direct people's behavior or course of events."
     Control.  Chemical.  Neural.  Human.  Control.
     Control.  Seizures.  Neurologists.  Control.  Me--a 52-year-old adult.  Control.
Control of seizures seems straightforward.  The neurologist identifies an anticonvulsant to control seizures.  Based on my weight, among other factors, the neurologist prescribes a specific dosage.  Simple.  Periodically, blood is drawn.  Lab technicians measure the amount of medication in my bloodstream.  Simple.
   Well...not so fast.
     For years, I thought that my neurologist had the final say in the anticonvulsants I took, and in the amount.  I respect the training, and clinical experience of neurologists.  Yet, prescription of an anticonvulsant that caused me to vomit incessantly for several months was a test of my strength, and an unforgettable lesson.
     I am the final arbiter of the medication--the final arbiter of the way I live.
      Underdosage had a clear--unmistakable--effect--a convulsion.  Underdosage had an incentive to correct--the consequence was too strong to tolerate.  The only option I understood was to accept the pronouncements of my neurologist.
     Control.  Tremors.  Neurologist.  Me--a 52-year-old adult.  Control.
     Tremors in my left hand started at least five years ago.  Fearful of what it might be, and without the strength to confront it, I denied it.  I knew people who loved me noticed--were deeply concerned--about the tremors.  But, I could not confront the tremors.  I needed control.  I needed to control what the diagnosis might be--I needed to control how I confronted it.  I needed to steel myself to confront it.
     Control.  The diagnosis.  Intentional tremors--essential-tremors.  Control.
     In my fearful--prediagnosis--days, the only way I knew to confront my tremors was to intend to be steady in my movement of my left hand, most notably my handwriting.  My thinking was that my hand would be steadier--my handwriting would be more legible, if only I concentrated my full attention on being steady.  It seemed simple.  It makes sense.  Well....the harder I tried, the shakier my hand became.  The harder I tried the more illegible my writing became.  The shakier I became, the more out of control I felt--emotionally.
     Control.  Intentional tremors.  Anti-tremor medication.  Control.
     Prescription of a medication to eradicate my tremors--to take away my lifelong fear--seemed irresistible. My lifelong fear?  Simple.  My left hand would be compromised temporarily, or permanently, such that my mental, emotional, and spiritual resources would be trapped in my body.
     Control.  Take prescribed medication.  Control.
     Taking one 20 mg. minuscule blue tablet three times a day seemed a benign price to pay.  I feel guilty in saying that that pill combined with the anticonvulsants I take left me feeling emotionally overwhelmed--out of control.
     Control.  Mind.  Body. Spirit.  Control.
     Though an adult of 52 years, I have relinquished control to medical professionals, who know better, or so I have submitted myself to believe.  Yet, slowly, ever so slowly, I am learning that I am the final arbiter of how I--how my body--shall live.
     Control.  Mind.  Body.  Spirit.  Control.
     My emotional response to my antitremor medication could not be measured clinically.  Thank God, my doctor believed me--honored my response.  A different dosage synchronized with my anticonvulsants seemed a reasonable alternative.  Somehow, I was overwhelmed by having to ingest medication more times during the day than at the beginning and end of it.  Yet, that was how I felt.  Interceding events between then and now have not changed how I feel.
     Control.  Mind.  Body.  Spirit.  Control.
     Honoring me--my response--involved an educated--well-informed--tweaking of my dosages.  With full-knowledge of adverse effects that might follow, I opted to try a higher dosage of my medication.  I did not think my tremors were as well controlled as they could be.  I was so overwhelmed emotionally, and lost perspective such that I agreed to try a higher dosage.  I confused tremors with loss of stamina.  I wanted my tremors eradicated and I wanted my indomitable left hand returned to me.  Tremors can be controlled, but I do not have the right to abuse my left hand by stretching it beyond its limits, if I have any desire to live fully engaged.
     Control.  Mind.  Body.  Spirit.  Control.
      I am not without control.  Overdosage of my medication.  Many people, when faced with medication overdosage issues throw up their hands--they submit to their doctor without proclaiming the limits by which they are willing to live.
    Choices between the lesser of two evils are troublesome at best.  Such choices should not be "entertained."  Such choices should be contemplated with due care.
    Control.  Mind.  Body.  Spirit.  Control.
     My choices?
     Have my tremors fully controlled, and live with clouded thoughts, and thoroughly exhausting depression, or make necessary accommodations to what medications cannot control.  I am still learning what that control--what that balance--implies on my life.  Those are the extremes.  I do not live in extremes.  I live a full life.  Most people I know live fully-engaged lives.  Several people I know concern me.
     Control.  Mind.  Body.  Spirit.  Control.
     My tremors are controlled through deliberate means.  Medication.  Accommodation--reasonable accommodation.  Engagement--mental, emotional, and spiritual engagement.
     Control.  Mind.  Body.  Spirit.  Control.
  Some refer to "Minnesota nice."  Though I live in Minnesota, I do not engage in "Minnesota nice,"  I do commit myself fully to passionate, optimistic living.  To the degree possible, I surround myself with individuals committed to live so.
     Control.  Mind. Body.  Spirit.  Control.

Blame??? Justified Living???

     Introspection was infused in my bloodstream at birth.  Through it, I have survived.  Through it, I pray I may thrive.
     A recent overdosage of an anti-tremor medication made me keenly aware of my thought processes--my mental, and emotional outlook.  With my recent "visitor," I  realized I needed to introduce him to people who had not seen him "lurking" around me--threatening to knock me down.
     Chemical balance--perfect chemical balance--affords me a rich, very stimulation life.  Not perfect.  But, rich--stimulating.  I want perfection.  Not a perfect life.  I know that is not possible.  I know if it were, the gift of introspection would be taken.  That is too heavy a price to pay.  Given the choice, a perfect life or introspection, I have no question.  Introspection is the treasure I seek.
    But...but....
    Chemical balance.  Perfect chemical balance.
    I know the landscape--the terrain--of chemical balance.  I have traveled paths of its imperfections many times.  Yet, how do I introduce others--how do I introduce it to individuals who know only my vibrant side?
    Recently, I struggled with that introduction.  How could I explain my compromised vibrancy to new comrades?
    Four choices--five, perhaps--were given to me.  Apologize.  Explain.  Blame.  Blame my chemical imbalance.  Justify my mental vacancy.  Or, a combination of the other four choices.
    Apologize.  "I am so sorry I did not come today with my promised documents, and input."
     Explain.  "I am taking new medication to control  my intentional tremors.  Past experience with other medications tells me that improper dosages can impair my thinking.  Right now, I just don't know what to think is happening."
    Blame.  Blame my chemical imbalance for falling short of my promises.
    Justify.  Justify that my current shortfalls were due to chemical imbalances, and not to feeling overwhelmed.
    Blame, and justification are two sides of the same creature.  Both scream of helpless pleading.  Of the two--if the two were my only choices--I would opt to justify my mental vacancy.  Brain damage has robbed me of an abundance of short-term memory.  I have some.  Yet, short-term memory is not the well-spring--the spark--of my vibrancy.
    When self-pity overtakes my spirit, blame takes advantage of my vulnerable soul.  I stand guard, lest I fall victim to self-pity and blame.
     I pray--with urgency, I pray, "God, banish chemical imbalance that threatens my vibrancy.  God, grant my new comrades with patience--with understanding, with compassion.  God, grant them understanding--my mental vacancy is not permanent.  My mental vacancy is temporary.  It may be explained.  God, grant me patience to survive your definition of 'temporary.'  May I thrive on the other side of 'temporary'--through its inner core."

An Unthinkable Thought

     As I watch my body deteriorate, I covet my speech, I covet my writing, I covet my capacity--the gift I have been given to think.
     I have been given a taste--a preview--of what living with impaired thinking is.  Recent anti-tremor medications--recent overdosages--reminded me of much more serious thought processes that have been impeded.
     In 2003, a serious overdosage of a prescribed anticonvulsant sent me to the hospital, and then home to my parents for several days.  My medications levels were adjusted.  My parents took me in for several days. Anyone who knows me, knows that being independent--living on my own--has been a source of tremendous pride.  That is how I was raised.  Yet, fearful to me was the prospect that if I left the hospital, and returned to my condo to live alone, I would forget to attend to the most basic of daily tasks.
     My medication dosages were changed.  I regained my capacity to return to my condo.  I returned to my full-time job.  Yet, on my first day back, I told my supervisor that I was afraid that I would not be able to do my job.  My short-term memory was non-existent--completely nonexistent.  For three weeks, I had no short-term memory.  I had to write down the simplest of instructions, and information, lest I would lose any sense of what had been said to me.
     The ability to think--the ability to compose thoughts--was no longer a given that I took for granted.  Thoughts looked like kites to my minds eye.  I tried to capture ideas and facts, and hold onto them to locate words and sentences to hold down the kite--to secure the thoughts.  During those early days, the only way I could express myself clearly was through writing.  Even then, I did not have the sense--the confidence--that my words matched my ideas--that my sentences made sense.  I sent e-mail messages to my mom to document  how I felt--how I was progressing, or thought I was progressing.  I pleaded with  her--she complied with my pleading--to give me feedback.  I owe my life to her, in every sense of the word.
     As I look back to the fearful times, I look to the future with harbored fear.  Will I lose hold the kite once again?  May I do anything to stop it--to stop it from happening?  What must I do?
     Losing  my thoughts--losing my gift of composing thoughts.  An unthinkable thought.

Left Speechless

    I love surprise.  I am hard to surprise, but, I love surprise.
    When I was born, my umbilical cord was wrapped around my neck five times.  Oxygen was cut off to the left side of my brain, which controls the right side of my body.  That physical reality of my birth caused my brain damage, which expresses itself through my cerebral palsy, and through my epilepsy.
    When I was born, doctors told my dad that I might never walk, and I might never learn to talk.  I have done both.  Dad teases me--anyone who has known me for any length of time may agree--once you learned to talk, I wasn't sure you would stop talking.
     I love to talk.  I love surprise.  Rarely am I rendered speechless.  I smile when I remember those precious moments of speechless surprise.
     Yet, not to diminish those moments of surprise, the prospect of losing speech, or living with impeded speech frightens me.  I have no evidence to indicate that my future includes speech impediments.  Yet, that is paramount in my fears.  I fear little.  I cannot afford to.  Yet, I do fear losing the gift of speech.  I am well aware of the doctor's words to Dad.  I want to give Dad something he can continue to tease me about.

Confronting Fear

     Confronting my fears--about my brain damage--through writing helps immeasurably.  It is my indulgence. I hope it may be more than that, but, it does a world of good to air fears.
     Dying of a seizure frightened me.  My seizures are well controlled by anticonvulsants.  I had heard of a form of seizures that kept going--status epilepticus.  I had heard that during pre-menopause that bodily chemistry changed, or was unstable.  Putting those two together, my paralyzing fear was that I would fall victim to status epilepticus.  There was hardly anyone I could ask.  My job was to assure family, friends, and colleagues--especially colleagues, who did not know me well--that it was highly unlikely that I would have a seizure.  My mother was a whole lot of help.  She had experienced no chemical imbalances during menopause.  Doctors were clueless regarding the living realities of epilepsy.  They knew little more than the chemical--the clinical--aspects of seizures.
     Menopause--successful, peaceful menopause--was a gift.  I could relinquish my fear, and move on to a new chapter of my life.
     Fear has not left me.  Yet, writing has liberated my fear--not eliminated it, but, writing has given voice to my fears.  Some are put off by confessing--by confronting--fear.
     Zoomer moved me away from fears of other people--of their judgments of my "chair."  I do not begrudge anyone such fears.  I am haunted by my fear of a co-worker's wheelchair.  She died at the hands of her mentally-ill husband.  She understood my fear.  She did not confront me with it.  We never spoke of it aloud.  She knew that I needed to move through my fear.  She could not force it.  Jean, I wish you could have met Zoomer.
    Being "given" less stamina, and less strength in my left hand, I am learning how to adjust.  What may I say?  What must I do?  What help do I need?

Unwelcome House Guests

     With age comes unwelcome house guests.  Brain damage accelerates their arrival, or so I was told.  In the past ten years, I have learned how to navigate the terrain of the dynamic duo.
     Tonight, I fear I am falling into three pitfalls--three deadly pitfalls.  I loathe wallowing, self-pity, and bitterness.  Negative thinking is a force I try to avoid.  Tonight I am fighting that demon.
     Since 2002, I have been introduced to osteoarthritis, and essential or intentional tremors.  I have opened my home to a power wheelchair--Zoomer is her name.
     Before I adopted Zoomer, I was asked to consider my long-term needs.  Not then.  Not in a year.  No, what might my needs be five years down the road?  Who knows?
     How was I supposed to divine such an answer?  Prayer?  Yes, but....I was being asked much more than to say, "Amen, I submit.  Amen."
     Did I want a joystick?  Did I want to buy an optional headrim to have stored for the day when I might lose the requisite strength in my left hand to manipulate the joystick?
     For a lifetime, I have feared losing capacity in my left hand.  The joystick was palatable.  It was marvelous that the chair could be fitted with a joystick on the left side.
     But....a headrim???  A headrim.
     I wanted no part of it.  Heck, I wanted no part of a wheelchair.  In fact, the day I entered my neighborhood medical supply store, I tried one scooter, and then, a wheelchair.  I had such a mental block regarding wheelchairs that I had to be told that I was sitting in a wheelchair.  My heart skipped a beat.
     I have yet to have the headrim delivered to me.  Yet, I did swallow hard, but not until a restless night of contemplation, did I agree to purchase a headrim.  I have not seen it.  For now, I have no desire to do so.  Solace is not what describes my feeling.  Satisfied may be the word.  While some must buy automobile insurance, I must buy the headrim--I did so.  The headrim is my insurance policy to cash in on at the point it becomes necessary.
     For now, I am trying to offer a modicum of hospitality to my unwelcome guests.  While I await the most unwelcome of guests I know might come, I adjust.
     I take pills.  I suck straws.  I zoom.  I research.  I write.
I swim.
     I listen.  To knocks at the door.  I listen keenly.  To my body.  My body rules.  My spirit must prevail.  My spirit must honor my body.
     I listen.  To my body.  My body rules.  My spirit prevails--peace--harmony prevails.  It must--I must.

Quality of Life

  Functioning normally, carrying out normal daily activities is vital to the test of new drugs into my system.  With attentiveness to the side effects the drug might have on me, avoiding paranoia was--is--equally vital.  Paranoia--depression--"the drug is not going to work, the drug is not going to steady me," was essential to avoid.
     I am still in the amusement park.  Yet, no longer am I on the roller coaster.  I am humoring the medication, "Can we work together?  Will you help me to live with some vibrancy?"
     I know what is in it for me.  Quality of life.  Not some arbitrary financial class.  No class status is involved.  No dramatic "end of life judgment."
     Quality of life.  Quality of my life.  Greedy I pray I am not.  To selfishness I aspire not.  My prayer?  Quality of life.  Passion.  Humor.  Insight. Clarity.  Quality of life.  No financial class.  Not lower-, not middle-, not upper-class.  No status.  Simply quality of life.  For this I pray.

Trapped--Lost--in the Fog

     Last week, a tweaking of medication left me trapped.  I sought the tweaking.  I knew without doubt that overdosage was possible.
     I was told--I understood--what some side effects might be.  Yet, I wanted more for my left hand--I needed more from my left hand-- if it was at all possible.
     Yet, as much as the possible side effects could be conveyed, no one, however competent, could quantify the intensity of the side effects might be.  Intellectually, I know that.  Yet, knowing that in my heart was another matter.
     I have little tolerance for amusement park rides.  Yet, last week, my tolerance was tested--truly tested.  Last week, side effects, and chemical tolerance we tested, as my tolerance for a roller coaster might be.  My tolerance--my patience--was tested.  I entered the "amusement park" knowing full well that it takes time--several days perhaps, depending on the medication, for the effectiveness, or the toxic effects of a drug to be felt.  That time span relates to drugs I have taken when they are first introduced to my bloodstream.
     I fancy myself to be a patient, yet passionate person, who understands that my body does not function quickly, yet unwilling to sit by and do nothing.  I understand that my physical body does not function quickly, save my left hand's capacity to catch falling objects in mid air.
     Yet....yet...mess with my mind--with my mental capacity--my capacity for clarity, for insight--to live fully, and I am deflated.  My enthusiasm--my balloon--with which I soar is punctured.
     I fear, "I will never be given another balloon with which I may fly.  Worse yet, I fear that  those who have known only my clear facade will be deterred by my intimate--my deflated soul.   I pray they may trust--they may have faith--my vibrant self shall be resurrected in some form.

A Tough Pill to Swallow

     I have taken many pills in my life--legally--all prescribed.  Different colors, different shapes, different  sizes, different tastes, different dosages, and different frequencies--I have taken many different pills for one reason--to keep me alive.
     Keep me alive. Not breathing.  Alive.  Clear in mind.  Steady.  Steady in body.  Deep in thought.  Filled with insight.  Filled--not full--with life.
     Last week, two little pills--two little blue pills--brought me to my knees.  Tremors in my left hand--my left hand, my only hand by which to live.  My right hand bends down--shies away from carrying her load.  So, I forge ahead.
     Medication overdosage.  I know the landscape.  I have scaled the terrain.  Several nights at my parents' home.  Nine days in the hospital.  Over six years, two separate instances introduced me to medication overdosage--to the self-advocacy necessary to adjust the blood levels.  The terms of art.  Blood levels.  Therapeutic blood range.  Troughs.  Dizziness.  Vomiting.
     Last week, two little pills--two blue pills--brought me to my knees.  Easy to digest--in my mouth, down my throat, in my stomach--yet, hard to swallow.  Severe arthritis. Severe cramp.  Insomnia.
     Shaky of hand.  Foggy of thought.  Need called me to self-advocacy.  Dosages totaled before my eyes.  Pill bottles at arms reach, I called for help.
     I started at one 20 mg. pill, three times daily for a total of 60 mg. daily.  Wanting synchronicity with my twice daily anticonvulsants, I felt overwhelmed--a pill popper--a resentful pill popper.  Honestly, I lost sight of the efficacy of the medication.  I was angry.  My lifelong fear was coming true--I was losing the use of my left hand, or so I feared.  Slowly, I have adjusted.  Not completely.  Some tangible adjustments.  Some changes to  my expectations.
    Settling for nothing short of perfection, adjustments were made in response to my preferences.  More control.  A higher dosage.  40 milligrams twice daily.  Synchronous with my anticonvulsants.
    Perfect.  It might be too much.  I might not tolerate the dosage.  But, hey, control.
    Days passed.  Severe arthritis in my left arm and hand--my left hand and arm.  Severe cramping.  Insomnia.  Depression.  Lack of drive.  Lack of interest.  Loss of short-term memory.
   Medication overdosage.  I know the terrain.  I called for help.  My dosage history clearly stated by me, I awaited help.  Confusion.  Instructions to take more than I was taking, not less.  I had no energy--mental or emotional--to debate, or clarify confused instructions.  Rare to me, I told the nurse to talk with the doctor, and call me.  I resisted her attempts to pacify me.  Foggy in mind though I felt, she was going to know that she needed to find help for me--advice, information to rectify my medication intolerance.
   "Maybe you can split the pills in half."
    "No.  That will not work.  I have use of one hand--my left hand.  I am taking this medication to control shakiness in my left hand.  No.  That will not work.  Even if I have the pills halved by the pharmacist, the pill would be so small that I would drop it with my shaky left hand.  No.  That will not work."
   My insistence paid off.  Not in less shakiness yet.  My insistence cleared my head of the toxic effects of the medication on my body.  Now, we shall work toward a steady left hand.
   Last week, two little pills--two blue pills--brought me to my knees.  Easy to digest--in my mouth, down my throat, in my stomach--yet, hard to swallow.

The Birth of Brain Damage Diary

     Brain Damage Diary will be an extension of my reflections regarding brain damage through two other blogs I write--Patty's Ponderings, and Patty's Epilepsy Chronicles.
     Brain Damage Diary will explore the subtleties that exceed the confines of epilepsy--the contents of Patty's Epilepsy Chronicles.  Do not be mistaken.  Epilepsy is one manifestation--one expression--of my brain damage.
     Patty's Ponderings differs from my plans for Brain Damage Diary in its scope, and subtlety.  Patty's Ponderings explores insights regarding world events, and daily living.  Both blogs shall continue.  I pray I may do justice to my other two blogs by developing this blog.
    Brain damage expresses itself in two forms directly--cerebral palsy, and epilepsy.  Osteoarthritis is not a direct manifestation of my brain damage.  Rather, osteoarthritis is an expression of the aging process--a process accelerated by the brain damage I experienced at birth.  So, I may refer to my osteoarthritis.  Brain damage did not cause osteoarthritis in me.  Brain damage introduced me to osteoarthritis earlier than I hoped it might.  Pardon me in so doing.  May my comments, insights, and reflections regarding osteoarthritis add to, rather than detract from my primary topic--brain damage.