Balance. Essential Tremors. Clarity.

     Well, the journey back continues.  My mental clarity--my drive--have returned.
     Thank God.  I get angry when my body fails--betrays--me.  Yet, truth be told, I figure out what I need to do, and try to move forward.  I do not have a choice.  I don't mean that pitifully.  I know people who whine, whimper, shy away from taking any positive action--any action at all, and my urge to strangle them is difficult to suppress.
     But, mess with my mental clarity, and I feel lost.
     I felt naked when I met with a group regarding church reform last Wednesday.  I could not remember ANY details of work I had immersed myself in.  The group was concerned that I was overcommitted in my time.  I only wish.
     My left hand needs more medication to be tamed now.  I will call on Thursday, and ask about going back to 60 mg of my antitremor medication.  I'm on 40 mg now.  I was on 80 last week.  Amazing what a difference 20 mg. makes...both ways...either way.
     The prayer I seek now is a bit more subtle, or nuanced.  Pills.
     Pills.  They are my lifeline--for a lifetime, as least as I  understand it to be now.  At least that is my understanding regarding my anticonvulsants.  I need to approach my antitremor medications with  the same mindset.  The temptation I need to resist is self-pity, resentment, some sense that I can surmount the medication, or a combination of any of those three.
     Beyond seeking balance of medications, if I am going to be successful, to any degree, I need to stay as active as possible.  This summer, I have gotten off track with the healthy routine I had established. The combination of doctor appointments, and church reform meetings messed up my swimming routine.  I spent at least 24 hours over six weeks helping a friend to set up a laptop--no--setting up my friend's laptop and scanner.  Everything I did was necessary, and in of themselves, I wanted to do each.
     I am hoping to get back to my routine of four days a week, an hour each day.  I am out of shape.  I am trying to take some other constructive action.  I am going to look at getting a front door handle, rather than a door knob, to lessen strain on my left hand.
     My prayer?  Now, and over the long haul.  Balance.  Steadiness.  Loss of any resentment or pity--toward the temptation to indulge in either.
     Thanks for listening.

Getting My Head Around It

     I have come a long way in two years when it comes to wheelchairs--my being in a wheelchair.  Maneuvering it.  After all, though in my 50s, I have never driven a car before now.  But, more to the point, I have come a long way in terms of surmounting fear.  "People are going to treat me differently.  Once again, I will need to be on the defensive to protect myself from misunderstanding."
     As far as I have come, I have yet to get my head around one aspect of wheelchairs.  Headrims.
     They are for other people.  Other people need them.  Not me.."
     I resisted the insurance representative, as sweet as she was, when she asked me to consider purchasing a headrim.
     "Think of your long-term needs.  Not now.  Not a year from now.  Think about your needs five years down the road." she said to me.
     I do not dwell on it, or I would never get out of bed in the morning.  But, someday, I may lose the capacity to use my left hand---the only hand available to me for meaningful use, since my right hand is affected significantly by cerebral palsy.
     Just now, surfing the web for information about wheelchair accessories, I came upon a picture of a boy in a wheelchair using a headrim.  Intellectually, I know, it is magnificent that headrims exist to provide mobility, and opportunities to stay actively engaged in this life we have been given.
     Yet, my intellect does not assuage the pit in my stomach.  Someday I may find myself in need of a headrim in order to remain mobile, and active.  What will that day--that life--look like?  Will I be able to talk?  Will people be able to understand me?
     I remember the most difficult time of my life.  I was in the hospital for nine days.  I had a toxic level of anticonvulsants in my bloodstream.  I was hooked up to an EEG for an outrageous nine days--outrageous by any standards of medical practice.  But, that was not the most difficult part of my life.
     "Just tell me.  What am I supposed to do.   Go back to work and try to figure out how to cope with my disintegrating body?  Stop working?  What?  Tell me.  What am I supposed to do?  Just tell me, and I will do it."
     I talked to my family incessantly.  Several good friends.  I had no sense of time.  I had no sense of what to do.
    That was four years ago.  A lifetime ago.
    Did I really work full time?  Did I really work for a large corporation?  Did I really work for the same company for 24 years?
   I never thought I would be working at the same company when I turned 65.  Yet, I did not know where I would be.  I still don't know.  I knew that I did not have the courage to seek a job elsewhere.  The prospect of being told I did not measure up was too much for me to confront.
     Had you told me in the hospital in 2009 that I would live the life I do now, I would not have believed you.  Volunteering twice a week doing research at  a museum.  Being very active in advocating for Catholic Church reform.  Preparing to advocate for accessible mass transit in the metropolitan area.  Writing blogs.  Swimming.  My life in 2013 was unimaginable in 2009.  Though intellectually civic-minded, "volunteering" was not a word in my vocabulary.  I could not define it.
     What will my life in 2017 be?  Will I need the headrim?  Are there other accommodations I will need to make?  No doubt there will be some.  What will they be?
     Right now I use my wheelchair to travel long distances.  I am able to walk around my home.  Yet, buying a refrigerator last summer opened to me the cold hard facts I needed to confront.  What dimensions--what height and depth did my refrigerator need to be to accommodate a Patty Thorsen in the future, who would be constantly bound to her wheelchair?
     Move me toward understanding, not what 2017 will be, but, toward what I will need--what inner resources--to live an engaged life.  Settle my queasy stomach.

Side Effects--The Third Dimension

     Side effects connote manifestations that follow the prescription of a prescription, or over-the-counter medication.  That is how I described it in Side Effects.  Yet, upon further reflection, I realize that it is to the individual with a disability to act as an informant regarding--an advocate for--the reporting of what a given medication is causing in them.  That turns on its head how we think of side effects.  However, if that is to happen, and be maintained the relationship between the individual with a disability and health care providers must change.
     This summer essential tremors in my left hand--the shaking of my confidence--led me to make an appointment with my neurologist.  A medication was prescribed.  Past experience with extreme chemical imbalances led me to ask my neurologist about the medication's side effect.  Depression.  Possible thoughts of suicide.  I was glad to know what side effects had been identified.  Though those side effects are--can be--very serious, I was not worried.  I have a strong emotional support system.  Generally, I am an upbeat person.  I left the doctor's office armed with information, and buoyed with unrealistic expectations of a cure.  Six weeks passed.  At my followup appointment, I reported progress, much more progress.  A cure.  Not attracted to slot machines, or poker, I was ready to gamble--gamble with higher dosages of the medication I was taking.  No cure was mentioned.  But....I knew what I wanted, and I was going to get it.  Case closed.
     I entered my cure fantasy phase knowing several facts about myself relevant to this situation.  First, I need to have directions written down, especially when it comes to medical issues.  Sometimes, and the only way I know to say when is to follow my intuition.  When that lovely little voice we all know says, "You need to write this down the instructions being given to you; it is as though I am Velcroing the instructions into my brain."  I still want the written instructions from others giving me the instructions.  That is not always true, but, when it is, I need to listen to my intuition.
     Beyond written instructions, I knew that I have struggled with strong resentment regarding medication--anticonvulsants.  It is not constant, but, it is a chronic condition to keep in check.  The third fact I know about myself is that I need to have clarity of thought.  Past chemical imbalances with anticonvulsants gave me an LSD-like trip once.  Psychodelic colors are nice, but, the feeling is not, when mental clarity is at stake.  Another anticonvulsant overdosage left me feeling as though I could see thoughts--the actual structure of thoughts--floating in front of me like a kite, but, a kite whose string was beyond my grasp.  Frightening.  Truly frightening.  The complete lack of any short-term memory during that same period of time was frightening.  Truly frightening.
     I entered into my request for a higher dosage of antitremor medication knowing the three facts regarding myself from past experience, not to mention the potential of depression, or suicidal thoughts.  I was instructed to report back in a week.  A mistake.  A huge mistake.  My thought process was so sluggish.  I struggled to stay my normal upbeat self.  Not happy-go-lucky.  That is not me, but, I struggled to function mentally.  I had no suicidal thoughts, but, the sluggishness was enough to forego a cure.  The sluggishness was enough for me to realize how much the old, lower dosage level had done to improve management of my tremors.
     My resentment regarding taking medication was aggravated by the prescription of antitremor medications.  Now, instead of two medications, I was faced with four medication bottles to fill into pill boxes.  The antitremor medication pills are very small--great for swallowing, smaller to pick up with my left hand.
     I called the doctor's office after the week on the higher medication dosage.  I said I wanted to go on a lower dosage than I was on most recently, but, on a higher level than I was on initially.  I knew what I wanted.  I was going to get it.  Case closed.  I wanted to achieve that goal by taking medication at morning, and at night, and not in the middle of the day.  Somehow, the mental, and/or emotional side effect of taking medication three times a day was to feel overdrugged--to feel like a drugstore.  It is not a feeling of being overmedicated.  Overmedicated and overdrugged are not the same animal.  They are two separate beasts.  I knew others might not understand the distinction, but, I did, and that was all that mattered.
     Efforts to get what I wanted had a cost--a heavy emotional toll.  The medical secretary suggested that I could cut one of the pills in half.  Two problems.  I could not cut the medication myself.  If my pharmacist cut the pills for me, I would not be able to pick up the pill with my left hand.  My left hand was affected by the tremors.  My tremors were the reason I needed to take the medication in the first place.  So, you say, "Just use your right hand."  Well, cerebral palsy took that option away.  Cerebral palsy stripped fine motor skills from my right hand.  Normally, I don't think of it that way, but, I was at my wit's end.  I was amazed that I had the emotional wherewithal to tell the medical secretary to go, talk with the doctor about options, and then call me back.  She needed to get information.  I needed to break down.  She did.  I did.  She called me back, and we straightened out the dosage issues.
     This is the third dimension of side effects.  Resentment.  Overdosages.  Overdrugged.  These are but a few of the side effects different from the tangible manifestations of taking a given medication that follow taking the pills.
     Side effects.  The first dimension.  Side effects.  The second dimension.  Side effects.  The third dimension.  Side effects.

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.

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?

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.